Health Communication in Practice: A Case Study Approach (Lea's Communication Series)

HEALTH COMMUNICATION IN PRACTICE A Case Study Approach LEA'S COMMUNICATION SERIES Jennings Bryani/Dolf Zillmann, Gen...

Author: Eileen Berlin Ray

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HEALTH COMMUNICATION IN PRACTICE

A Case Study Approach

LEA'S COMMUNICATION SERIES Jennings Bryani/Dolf Zillmann, General Editors Selected Titles in Applied Communication (Teresa L. Thompson, Advisory Editor) include: Braithwaite/Thompson • Handbook of Communication and People With Disabilities: Research and Application Greene/Derlega/Yep/Petronio • Privacy and Disclosure of HIV in Interpersonal Relationships: A Sourcebook for Researchers and Practitioners Hummert/Nussbaum • Aging, Communication, and Health: Linking Research and Practice for Successful Aging Nussbaum/Pecchioni/Robinson/Thompson • Communication and Aging, Second Edition Socha/Diggs • Communication, Race, and Family: Exploring Communication in Black, White, and Biracial Families Thompson/Dorsey/Miller/Parrott • Handbook of Health Communication Williams/Nussbaum • Intergenerational Communication Across The Life Span

For a complete list of titles in LEA's Communication Series, please contact Lawrence Erlbaum Associates, Publishers, at www.erlbaum.com.



Edited by

Eileen Berlin Ray Cleveland State University

2005

LAWRENCE ERLBAUM ASSOCIATES, PUBLISHERS Mahwah, New Jersey London

Senior Acquisitions Editor: Assistant Editor: Cover Design: Textbook Production Manager: Full-Service Compositor: Text and Cover Printer:

Linda Bathgate Karin Wittig Bates Kathryn Houghtaling Lacey Paul Smolensk! TechBooks Hamilton Printing Company

This book was typeset in 10/12 pt. Times, Italic, Bold, Bold Italic. The heads were typeset in Americana, and Americana Bold Italic.

Copyright © 2005 by Lawrence Erlbaum Associates, Inc. All rights reserved. No part of this book may be reproduced in any form, by photostat, microform, retrieval system, or any other means, without prior written permission of the publisher. Lawrence Erlbaum Associates, Inc., Publishers 10 Industrial Avenue Mahwah, New Jersey 07430 www.erlbaum.com

Library of Congress Cataloging-in-Publication Data Health communication in practice : a case study approach / edited by Eileen Berlin Ray. p. ; cm.—(LEA's communication series) Includes bibliographical references and index. ISBN 0-8058-4757-X (hardcover : alk. paper)—ISBN 0-8058-4758-8 (pbk.: alk. paper) 1. Communication in medicine—Case studies. 2. Communication in public health—Case studies. 3. Physician and patient—Case studies. [DNLM: 1. Professional-Patient Relations. 2. Communication. 3. Patient Care—Case Reports. 4. Patient Care—psychology. W 62 H4343 2005] I. Ray, Eileen Berlin. II. Series. R118.H4332005 610.69'6—dc22

2004024823 Books published by Lawrence Erlbaum Associates are printed on acid-free paper, and their bindings are chosen for strength and durability. Printed in the United States of America 10 9 8 7 6 5 4 3 2 1

To my father,

N. Paul Berlin 1922-2003 Who taught me to stand up for what I believe in even when he disagreed, to take responsibility and apologize for mistakes made, and that there isn't much that a hug and a corny joke can't make better.

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Contents Introduction List of Contributors

I: ISSUES IN PROVIDER-RECIPIENT COMMUNICATION

xi xix

1

1

The First Three Minutes Donald J. Cegala

2

Staying Out of the Line of Fire: A Medical Student Learns About Bad News Delivery Teresa L. Thompson and Catherine Gillotti

11

Problematic Discharge From Physical Therapy: Communicating About Uncertainty and Profound Values Austin S. Babrow and David O'Connor Dinn

27

"I Want You to Put Me in the Grave With All My Limbs": The Meaning of Active Health Participation Barbara F. Sharf, Paul Haidet, and Tony L. Kroll

39

3

4

5

Direct Marketing Directs Health Care Relationships?: The Role of Direct-to-Consumer Advertising of Prescription Drugs in Physician-Patient Communication Rebecca J. Welch Cline and Henry N. Young

II: ISSUES IN DECISION MAKING 6

Communication and Shared Decision Making in Context: Choosing Between Reasonable Options Carma L. Bylund and Rebecca S. Imes

3

53

67 69

7

Negotiating Cancer Care Through Communication Dan O 'Hair, Sharlene R. Thompson, and Lisa Sparks

81

8

Explanations of Illness: A Bridge to Understanding Timothy M. Edgar, Dawn W. Satterfield, and Bryan B. Whaley

95

9

Talking to Children About Illness Jenifer E. Kopfman and Eileen Berlin Ray

111

vii

Viii

CONTENTS

III: ISSUES IN SOCIAL IDENTITY 10

A Treatment Team Approach: The Negotiation of Rehabilitation Goals for Survivors of Traumatic Brain Injury Kami J. Silk

121 123

11

Communication Accommodation in Counseling Lisa Murray-Johnson and Cat McGrew

135

12

Social Identity and Stigma Management for People Living With HIV Lance S. Rintamaki and Dale E. Brashers

145

13

"Every Breast Cancer Is Different": Illness Narratives and the Management of Identity in Breast Cancer Leigh Arden Ford and Brigitte Cobbs Christmon

157

"They Make Us Miserable in the Name of Helping Us": Communication of Persons With Visible and Invisible Disabilities Dawn O. Braithwaite and Phyllis Japp

171

14

IV: ISSUES IN FAMILY DYNAMICS 15

16

181

Communicating About Family History in an Age of Genomic Health Care: Expanding the Role of Genetic Counseling Roxanne L. Parrott and Judith Weiner

183

Catching Up With Down Syndrome: Parents' Experiences in Dealing With the Medical and Therapeutic Communities Carol Bishop Mills

195

17

Grieving Families: Social Support After the Death of a Loved One Craig R. Hullett

18

Negotiating Communication Challenges While Experiencing Alzheimer's Disease: The Case of One Hispanic Family Lyle J. Flint, Jim L. Query, Jr., and Alyssa Parrish

223

Finding the Right Place: Social Interaction and Life Transitions Among the Elderly Margaret J. Pitts, Janice L. Krieger, and Jon F. Nussbaum

233

ISSUES IN HEALTH CARE DELIVERY

243

19

V:

211

20

Role Negotiation, Stress, and Burnout: A Day in the Life of "Supernurse" Julie Apker

21

Medical Care, Health Insurance, and Family Resources: Complications to Otherwise Good News George B. Ray

261

Enhancing Culturally Competent Health Communication: Constructing Understanding Between Providers and Culturally Diverse Patients Claudia V. Angelelli and Patricia Geist-Martin

271

22

245

CONTENTS

IX

23

The Patient in 4: Framing and Sense-Making in Emergency Medicine Alexandra G. Murphy, Eric M. Eisenberg, Kathleen M. Sutcliffe, and Steven Schenkel

285

24

Reorganized Medical Practice: An Institutional Perspective on Neonatal Care John C. Lammers, Kristin A. Lindholm, and Heidi M. Hazeu

297

25

Making Empowerment Work: Medical Center Soars in Satisfaction Ratings Athena du Pre

311

VI: ISSUES IN INFORMATION DISSEMINATION 26

27

323

No, Everybody Doesn't: Changing Mistaken Notions of the Extent of Drinking on a College Campus Linda C. Lederman, and Lea P. Stewart

325

Personal Stories and Public Activism: The Implications of Michael J. Fox's Public Health Narrative for Policy and Perspectives Christina S. Beck

335

28

Journey of Life: A Radio Soap Opera on Family Planning in Ethiopia Kim Witte

347

29

Narrowing the Digital Divide to Overcome Disparities in Care Gary L. Kreps

357

Author Index

365

Subject Index

373


Introduction In 1993, when Lawrence Erlbaum Associates published Case Studies in Health Communication (Ray, 1993), it was perhaps the second case studies book in the communication discipline (following Sypher, 1990) and the first in health communication. Since then, there have been several more that take a case studies approach, focusing on contexts such as interpersonal communication (Braithwaite & Wood, 2000), organizational communication (Keyton & Shockley-Zalabak, 2004), and communication and disenfranchisement (Ray, 1996). The fact that this genre is now commonly used in various communication classes speaks to its utility and importance as a pedagogical tool. Case studies provide an important instructional aid in the classroom. They bring academic material to life, make it relevant to students so that concepts and theories stay with them after the class ends, and help students to examine and challenge their ways of doing things. Case studies are valuable in health communication as students read cases about, for example, communication that resulted in good or poor health outcomes, persons with disabilities communicating their needs and desires, the impact of managed care, and how public health campaigns are developed and evaluated. Cases may instigate dialogue outside the classroom. Discussing issues such as advance directives or organ donation can be softened when couched in the context of a case, enabling families and friends to talk about these sensitive topics. Good case studies integrate theory and practice in a way that makes it barely noticeable and almost painless to students. We learn a great deal about the health care system and health communication when we are forced to confront it in a time of crisis. When the crisis is over, we reflect on decisions we made, interactions we had, information we sought, and what we might have done differently. We have a newfound wealth of knowledge about the health care system. Although hindsight is 20/20, it would have been especially helpful to have some of that information at the beginning, rather than at the end, of a health care crisis. Case studies can provide some of this insight up front. By reading about others' experiences, we are more attuned to questions to ask, support to seek, when and how to assert ourselves, and how we can communicate most effectively. In this sense, case studies are both descriptive and prescriptive. Health Communication in Practice: A Case Study Approach offers several additions to the 1993 text. First, authors include members of the medical community as well as communication scholars. This combination adds to the richness and reality of the situations presented in the cases. Second, there is a list of relevant concepts and their definitions at the end of each case. This was added as a result of feedback from my students who read drafts of the cases. Third, topics reflect changes in health communication issues over the past 10 years. Although some cover themes that are also found in the 1993 volume (e.g., persons with disabilities, the elderly, job stress and burnout among hospital staff, and information dissemination), the new cases provide a different and updated perspective. Some of the new topics in this volume include delivering bad news, genetic testing, intercultural communication, grieving families, and international health campaigns. As you will see in the following overview, this volume covers a plethora of health communication issues.

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OVERVIEW OF THE CASES The organization of the case studies in this volume is somewhat arbitrary, offering instructors one way (my way) of framing the cases. Several themes run throughout many of the cases, such as the social construction of identity and the renegotiating of this identity and relational roles during and following a health crisis, stigma and its management, provider-recipient communication, the importance of formal and informal social support, and the role of patient activism in our health care. My goal was to include cases that cover a range of topics that can be organized to fit a variety of pedagogic strategies. The following overview provides a brief description of these cases. Part I is distinguished by its dominant focus on provider-recipient communication and its importance to subsequent diagnosis and treatment. The first two cases (Cegala and Thompson & Gillotti) focus on doctor-patient communication in terms of making the diagnosis and then communicating diagnosis and treatment options to the patient. In Chapter 1, Cegala presents actual discourse between a physician and patient in the first three minutes of their interview. These first three minutes are critical for the patient's treatment. Most decisions about diagnosis and treatment are made based on what patients tell their physicians about their medical condition, which takes place during history-taking when they report their symptoms. In addition to affecting the accuracy of a patient's diagnosis, incorrect treatment can lead to malpractice suits. Whereas Cegala's case focuses on the dyadic communication leading to the provider's assessment, Thompson and Gillotti (Chapter 2) focus on the impact of the provider's delivery of bad news to a patient. Through observing other doctors and experiences within her own family, Christie, a medical resident, observes a range of methods, some much better than others, to balance giving bad news and providing support to patients. It is clear that the timing of the news, the source delivering it, and the medium used impact what patients and their family members hear and process. Given that they must make decisions about treatment based on this information, its effective delivery is crucial. In Chapter 3 (Babrow & Dinn), we depart from the physician-patient dyad to the relationship between a physical therapist and patient. We meet Charlie, a 68-year-old retired farmer who is recovering from a life-altering stroke. We see the intersection of his physical and emotional recovery, not only for Charlie but for his wife and daughters as well. This is exacerbated by their lack of communication about their feelings and frustrations with Charlie's health issues. Lack of communication is also central in Charlie's relationship with his physical therapist. Their poor communication results in very different perceptions of how much progress has been made. The assessment of progress is critical because the physical therapist is legally bound to only work with patients as long as they are making satisfactory progress. When the therapist stops therapy, Charlie suffers an emotional setback as well. There are no easy answers here, but the complexities of life-altering health events and the impact of communication, or lack of it, are painfully clear. Chapters 4 and 5 emphasize the patient's role as activist. In Chapter 4, Sharf, Haidet, and Kroll discuss the concept of narrative and its importance in shaping how patients respond to both the experience of serious illness and the quality of the patient-physician relationship. Joanne, a 34-year-old woman, tells her story of attempting to manage her treatment for diabetes. She works hard to balance accepting guidance from her doctor and controlling her own treatment. This case provides an exemplar for how we can develop partnerships with our doctors and the importance of perceiving ourselves as active participants in control of our health care. Chapter 5 continues the issue of patients taking an active role in their health care. Cline and Young explore the impact of direct-to-consumer advertising (DTCA) on doctor-patient relationships. With more than $2 billion spent on DTCA in 2002, we have become inundated

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with media messages encouraging us to ask our doctors for particular prescriptions. Although both proponents and opponents agree that DTCA is changing the health care relationship from a traditional paternalistic model toward a participatory model, they do not agree about the consequences of this change. This case provides a debate of the issue among five doctors, each representing different perspectives, as they discuss their treatment of patients who seek prescriptions based on consumer advertising. Part II focuses on issues in decision making. Chapter 6 (Bylund & Imes) juxtaposes two scenarios, childbirth and prostate cancer. Both underscore the importance of examining the medical, relational, and personal contexts and their impact on decision making. An understanding of the interaction among the medical context, the relational context between the patient and care provider, and each person's personal context, including input from family and friends, is essential to appreciate the complexities of health-related decision making. O'Hair, Thompson, and Sparks (Chapter 7) use the Cancer Survivorship and Agency Model (CSAM) as an explanatory mechanism for determining how and why certain decisions are made about medical care. The model is made up of four somewhat sequential stages. We follow Ann Benton, a 64-year-old woman diagnosed with pancreatic cancer, as she moves from shock to uncertainty to empowerment to agency and see how the CSAM provides a framework for understanding the decisions she makes regarding her treatment. In Chapter 8, Edgar, Satterfield, and Whaley provide scenarios using diabetes to exemplify many of the issues and variables to be considered (e.g., audience/culture, message content, and structure) in designing messages to explain illness. We meet 15-year-old Victor after his diagnosis of type 2 diabetes and observe how his doctor explains his illness and treatment to him. We also meet Charlene, 44, a Lakota Sioux woman, who is diagnosed with a prediabetic condition. When Charlene returns to her family home, she meets Mary, a community health representative, who explains the disease using stories and metaphors that Charlene can easily understand and relate to. The importance of tailoring health messages is continued in Chapter 9 by Kopfman and E. B. Ray. This time, we see the adaptation of medical information to young children and the importance of language and metaphors to encourage their compliance with prescribed regimens. We also consider how these explanations may change when communicating health information to siblings or peers. The case also brings forth the different opinions adults have about what type and how much information is appropriate for children to know about their own and others' illnesses. Part III focuses on issues in social identity; how people, as a result of various events in their lives, must redefine who they are and renegotiate their relationships. In Chapter 10 (Silk), we meet Henry, 33, who survived a head-on collision with another motor vehicle and suffered traumatic brain injury. As a result, Henry has had difficulty with short-term memory and behavioral control, was paralyzed from the waist down, and needs assistance with his adult daily living skills. He has been living at a rehabilitation center, and this case focuses on a meeting with his treatment team and parents. This case underscores not only the importance of the communication among the team members and among them, Henry, and his parents, but also how their verbal and nonverbal communication impacts Henry as he attempts to redefine his identity as a person with disabilities. In Chapter 11 (Murray-Johnson & McGrew), we follow 22-year-old Sandra through her counseling sessions with Karen at a battered women's shelter. Through the use of communication accommodation, Karen is able to help Sandra make different decisions, regain self-esteem, and shift her identity from passive victim to strong survivor. Chapter 12 (Rintamaki & Brashers) deals with how people manage the stigma of HIV in their social encounters. People with HIV have to decide if disclosing their health status to others is worth the risk. What impact is this disclosure likely to have on how they are perceived and on the relationship? By observing a small support group of people living with HIV, this case

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highlights these dilemmas and provides examples of strategies people employ to manage HIV stigma. Through the breast cancer narratives of four very different women, Ford and Christmon (Chapter 13), examine how each woman's story becomes a mechanism for "explaining" the experience of breast cancer to herself and to others. Through the communicative act of telling their stories, the women provide insight into how they try to make sense of their illness by reflecting on their experiences and renegotiating their identities with the significant others in their lives. In Chapter 14, Braithwaite and Japp deal with issues of identity and stigma for people with visible and invisible disabilities. Others may not accommodate to a person with an invisible disability because they may forget the person is not completely healthy or may not know or believe they are really disabled. For the person with the disability, managing the communication problems can be as difficult as the physical challenges. Support groups can help those with invisible disabilities by providing a forum to share experiences and information with similar others. Part IV focuses on communication dynamics within families and with health care providers through some of life's unexpected health situations. Parrott and Weiner (Chapter 15) consider communication issues related to genetic counseling and sharing information among family members. The difficulties occur when a family member is discovered to have an inherited gene that has potentially serious health implications. Ethical issues regarding decisions by family members to be tested, how that information is used, and long-term concerns are highlighted. In addition to the immediate health concern, the authors also raise issues of potential problems if positive results become part of a person's medical record. In Chapter 16, Carol Mills and her husband welcome a child with trisomy 21 into their family. Their positive perspective is challenged by people in the medical and therapeutic communities. Mills recounts some of the major medical and therapy provider interactions she and her husband have experienced as the parents of a child with trisomy 21, as well as the experiences of several of their friends. Some of these experiences are joyous, others are infuriating, and still others are heartbreaking. For the parents of a child with special needs, these interactions carry great importance and power, and impact them from diagnosis on. Chapter 17 (Hullett) describes The Center, a support center specifically designed to help grieving families. They tailor their services to the specific needs of their members according to the ways in which grief affects family members of varying ages. In this case, we observe support groups for adults, teens, and children as each attempts to deal with their grief. Not all are successful; marriages end, children hide their grief in drugs or alcohol. But for those who are able to talk about their emotions in this safe environment, there is a high likelihood that they will successfully grieve their loss and move on. In Chapter 18, Flint, Query, and Parrish introduce us to the Gonzalez family, an Hispanic family dealing with Alzheimer's disease (AD). Hispanics are twice as likely to develop AD than Caucasians by the age of 90. Cultural norms include not talking about illness, rejecting formal outside assistance and relying instead on family members as caregivers and the only means of social support. In this case, secrecy surrounds the illnesses and deaths of two family members, both victims of AD. The case explores what happens when this information is disclosed and the implications for family relationships, support, and health care decisions. As we age, many of us will have to move from independent living to more and more dependence on others. We may move in with family or to a retirement village, an assisted living facility, or a nursing home. For many, the physical changes are compounded by psychological difficulties adapting to these new environments. In Chapter 19 (Pitts, Krieger, & Nussbaum), we meet Kris, a remarkably articulate 92-year-old widower who has moved from independently living with his wife to their living together in assisted living until her death, to his permanent relocation to an intensive nursing care room. Although the community in which Kris resides

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prides itself on maintaining the dignity of its residents, offering an independent lifestyle, and providing opportunities for social engagement, Kris reveals his personal struggle to create and sustain relationships and accept that he must now depend greatly on others for daily assistance. Part V focuses on issues in the delivery of health care. Health care delivery has changed dramatically with the proliferation of managed care. The shift from a service to business model has forced hospitals to stay competitive by reducing costs at all levels. National trends such as hospital overcrowding and nursing shortages add to an increasingly difficult work environment. The impact is felt most strongly by care providers and ultimately affect patient care. In Chapter 20 (Apker), we follow Rob, a 35-year-old registered nurse at a 900-bed city hospital that relies heavily on Medicare and Medicaid funding for patient health care costs. We watch Rob struggle to meet his personal standards of nursing in the face of stresses caused by the realities of budget cuts, staff shortages, and reduced patient stays. We see additional health care delivery differences caused by racial and socioeconomic disparities. These demographics impact access to health care, insurance coverage, and treatment. In Chapter 21, G. B. Ray addresses these issues through the prenatal care of Angela and Jeffrey, an African American couple pregnant with their first child. Their excitement of becoming new parents becomes overshadowed by the realities of escalating health care needs and costs. They are also faced with a paternalistic, dogmatic communication style from their care provider once he is aware of their financial situation. The couple works hard to meet their current and future health needs, but the stresses of paying for this care and interacting with their doctor casts a negative pall over their relationship during what should be a joyous time in their lives. In Chapter 22 (Angelelli & Geist-Martin), we observe communication breakdown and miscommunication when a third party is involved. In this case, the patient and nurse must use an interpreter as they discuss prenatal testing. The triadic communication is further complicated by differences in language, health care beliefs and practices, and reliance on the interpreter to accurately reflect these cultural differences. For the health care provider, the interpreter keeps the patient on track; for the patient, the interpreter is a co-conversationalist. Chapter 23 (Murphy, Eisenberg, Sutcliffe, & Schenkel) focuses on the communication among hospital emergency department members as they try to find and correct errors before they escalate into a crisis. The authors follow a single detailed case, a "near miss" regarding a serious head trauma. They describe the events of that day using three different sense-making frames to show how different kinds of information led to a deceptively straightforward set of individual and organizational actions that almost had an adverse effect on the patient. Lammers, Lindholm, and Hazeu (Chapter 24) go beyond a specific illness episode and examine hidden communication—the exchanges and relationships between hospitals, doctors, clinics, and governmental regulators. This case concerns a successful and popular physician who practiced neonatal medicine as a member of a multispecialty medical group. The authors focus on the organizational, economic, and regulatory context and emphasize the formal rules that constrain communication between providers and nonproviders other than patients, such as administrators, managers, and contract officers. In Chapter 25 (du Pre), we see an example of health care delivery that works. Faced with a health care system in which staff morale was low, patients were not satisfied with their care, and staff turnover was high, the leaders transformed the hospital's culture. The result was an organization named by Fortune magazine as one of the 100 best companies to work for in the United States in 2002 and 2003 and one that consistently ranks among the top 1 % of hospitals in the United States in patient satisfaction. This case examines how this metamorphosis was accomplished through organizational members' use of communication to establish heroes and villains, shared values, rituals and ceremonies, and active communication networks.

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Finally, Part VI highlights issues related to health campaigns designed to disseminate healthrelated information and change behaviors. Lederman and Stewart (Chapter 26) focus on college drinking norms. The image of heavy drinking among college students is created and reinforced through the media and students sharing their "war stories." After more than a decade of study, however, researchers at Rutgers University found that while the majority of students did not drink dangerously, a high proportion of first-year students did. This case follows the development, implementation, and evaluation of a campaign to educate first-year students about the real drinking norms on their campus. In Chapter 27, Beck uses Michael J. Fox's disclosure of Parkinson's disease (PD) to analyze how someone famous constructs his narrative to protect his private life while being in the public spotlight. When people suffer illness or injury, they, their families, and concerned others are faced with reorienting their lives to incorporate these challenges. This is further complicated when the afflicted person is in the public spotlight. Fox shifts his identity from primarily an actor to an activist. For a celebrity, the process of enacting a preferred social self in light of an emergent health issue can be complicated. Fox has the opportunity to use his celebrity to further the cause of PD and does so through magazine articles, television interviews, and testifying before a Senate subcommittee. In doing so, he tries to navigate the difficult terrain of his private life and public persona, especially because his celebrity status enables him to raise public awareness and millions of dollars for research of PD. Witte's case study (Chapter 28) shows how a fear appeal theory was used in Ethiopia to design both research and an entertainment education program. Using the Extended Parallel Process Model (EPPM) theory as a framework, formative research was used to develop a 26-week radio serial drama to promote family planning. The case describes the Ethiopian context and research project, the EPPM, and the results of the research. Chapter 29 (Kreps) describes a unique health communication research initiative sponsored by the National Cancer Institute. It was designed to learn how to communicate effectively through new communication technologies with several hard-to-reach groups of people in the United States. Called the Digital Divide Pilot Projects, they developed and tested new strategies for providing different poor and underserved groups of people with access to current and accurate information about cancer prevention, control, and treatment. Kreps describes four pilot projects and the new community strategies each developed for providing these groups with access to relevant computer-based information about cancer. As you can see from the descriptions, these cases include many topics, populations, contexts, and issues. The contributors to this volume are scholars and practitioners who bring their expertise to each case and bring to life obvious and subtle complexities across positive and negative examples of health communication. The cases tackle timely topics, are insightful, and add to our corpus of materials for teaching health communication.

ACKNOWLEDGMENTS There are many people to thank for making this book a reality. First, I was fortunate to work with an outstanding group of contributors. They worked hard, responded quickly to my feedback, and kept their sense of humor. They were committed to this project from the beginning, and their enthusiasm never waned. Second, I want to thank my husband, George, and our children, Bryan and Lesley, for their constant support, love, and laughs. Third, I am extremely grateful to Linda Bathgate and Karin Wittig Bates at Lawrence Erlbaum Associates for their support throughout this project. All of these people reminded me so many times, in so many ways, that we were all in this together. I am very fortunate to have them in my personal and professional life as my friends and colleagues.

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REFERENCES Braithwaite, D. O., & Wood, J. T. (Eds.). (2000). Case studies in interpersonal communication: Processes and problems. Belmont, CA: Wadsworth. Keyton, J., & Shockley-Zalabak, P. (Ed.). (2004). Case studies for organizational communication: Understanding communication processes. Los Angeles, CA: Roxbury. Ray, E. B. (Ed.). (1993). Case studies in health communication. Hillsdale, NJ: Lawrence Erlbaum Associates. Ray, E. B. (Ed.). (1996). Case studies in communication and disenfranchisement: Applications to social health issues. Mahwah, NJ: Lawrence Erlbaum Associates. Sypher, B. D. (Ed.). (1990). Case studies in organizational communication. New York: Guilford.


List of Contributors Claudia V. Angelelli, Ph.D. Department of Spanish and Portuguese San Diego State University San Diego, CA 92182

Brigitte Cobbs Christmon, M.A. Department of Communication Western Michigan University Kalamazoo, MI 49008

Julie A. Apker, Ph.D. Department of Communication Western Michigan University Kalamazoo, MI 49008-5318

Rebecca J. Welch Cline, Ph.D. Barbara Ann Karmanos Cancer Institute Hudson Webber Cancer Research Center Wayne State University Detroit, MI 48201

Austin S. Babrow, Ph.D. Department of Communication Purdue University West Lafayette, IN 47907 Christina S. Beck, Ph.D. School of Communication Studies Ohio University Athens, OH 45701 Dawn O. Braithwaite, Ph.D. Department of Communication Studies University of Nebraska-Lincoln Lincoln, NE 68588 Dale E. Brashers, Ph.D. Department of Speech Communication University of Illinois at Urbana-Champaign Urbana, IL 61801 Carma L. Bylund, Ph.D. Center for Education Research and Evaluation Department of Sociomedical Sciences Columbia University Medical Center New York, NY 10032 Donald J. Cegala, Ph.D. School of Journalism and Communication Department of Family Medicine Ohio State University Columbus, OH 43210

David O'Connor Dinn, P.T. Department of Communication Purdue University West Lafayette, IN 47907 Athena du Pre, Ph.D. Department of Communication Arts University of West Florida Pensacola, FL 32514 Timothy M. Edgar, Ph.D. Department of Marketing Communication Emerson College Boston, MA 02116 Eric M. Eisenberg, Ph.D. Department of Communication University of South Florida Tampa, FL 33620 Lyle J. Flint, Ph.D. Department of Communication Studies Ball State University Muncie, IN 47306 Leigh Arden Ford, Ph.D. Department of Communication Western Michigan University Kalamazoo, MI 49008

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LIST OF CONTRIBUTORS

Patricia Geist-Martin, Ph.D. School of Communication San Diego State University San Diego, CA 92182 Catherine M. Gillotti, Ph.D. Department of Communications and Creative Arts Purdue University, Calumet Hammond, IN 46323 Paul Haidet, M.D. Department of Medicine Baylor College of Medicine and Houston Center for Quality of Care and Utilization Studies Houston, TX 77030 Heidi M. Hazeu, M.A. Department of Speech Communication University of Illinois at Urbana-Champaign Urbana,IL61801 Craig R. Hullett, Ph.D. Department of Communication Arts University of Wisconsin-Madison Madison, WI 53706 Rebecca S. Imes, M.A. Department of Communication Studies University of Iowa Iowa City, IA 52242 Phyllis Japp, Ph.D. Department of Communication Studies University of Nebraska-Lincoln Lincoln, NE 68588

Janice L. Krieger, M.A. Department of Communication Arts and Sciences The Pennsylvania State University University Park, PA 16802 Tony L. Kroll, M.A. Department of Communication Texas A&M University and Houston Center for Quality of Care and Utilization Studies College Station, TX 77843 John C. Lammers, Ph.D. Department of Speech Communication University of Illinois at Urbana-Champaign Urbana, IL 61801 Linda C. Lederman, Ph.D. Center for Communication and Health Issues School of Communication, Information and Library Studies Rutgers University New Brunswick, NJ 08901 Kristin A. Lindholm, M.A. Department of Speech Communication University of Illinois at Urbana-Champaign Urbana, IL 61801 Cat McGrew, M.A. School of Communication Ohio State University Columbus, OH 43210 Carol Bishop Mills, Ph.D. Department of Communication Studies University of Alabama-Birmingham Birmingham, AL 35294

Jenifer E. Kopfman, Ph.D. School of Communication Cleveland State University Cleveland, OH 44115

Alexandra G. Murphy, Ph.D. Department of Communication DePaul University Chicago, IL 60614

Gary L. Kreps, Ph.D. Department of Communication George Mason University Fairfax, VA 22030

Lisa Murray-Johnson, Ph.D. School of Communication Ohio State University Columbus, OH 43210


Jon F. Nussbaum, Ph.D. Department of Communication Arts and Sciences Pennsylvania State University University Park, PA 16802 Dan O'Hair, Ph.D. Department of Communication University of Oklahoma Norman, OK 73019

Dawn W. Satterfield, Ph.D. Centers for Disease Control and Prevention Division of Diabetes Translation Atlanta, GA 30341 Steven Schenkel, M.D. University of Michigan Medical School 1500 East Medical Center Drive Ann Arbor, MI 48109

Alyssa Fairish, M.A. School of Communication University of Houston Houston, TX 77204

Barbara F. Sharf, Ph.D. Department of Communication Texas A&M University College Station, TX 77843

Roxanne L. Parrott, Ph.D. Department of Communication Arts and Sciences Pennsylvania State University University Park, PA 16802

Kami J. Silk, Ph.D. Department of Communication Michigan State University E. Lansing, MI 48824

Margaret J. Pitts, M.A. Department of Communication Arts and Sciences Pennsylvania State University University Park, PA 16802

Lisa Sparks, Ph.D. Department of Communication George Mason University Fairfax, VA, 22030

Jim L. Query, Jr., Ph.D. School of Communication University of Houston Houston, TX 77204

Lea P. Stewart, Ph.D. School of Communication, Information and Library Studies Rutgers University New Brunswick, NJ 08901

Eileen Berlin Ray, Ph.D. School of Communication Cleveland State University Cleveland, OH 44115

Kathleen M. Sutcliffe, Ph.D. University of Michigan Business School 701 Tappan Street Ann Arbor, MI 48109

George B. Ray, Ph.D. School of Communication Cleveland State University Cleveland, OH 44115 Lance S. Rintamaki, Ph.D. Midwest Center for Health Services and Policy Research Hines VA Hospital Hines, IL 60141

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Sharlene R. Thompson, M.A. Department of Communication University of Oklahoma Norman, OK 73019 Teresa L. Thompson, Ph.D. Department of Communication University of Dayton Dayton, OH 45469

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Judith Weiner, M.A. Department of Communication Arts and Sciences Pennsylvania State University University Park, PA 16802

Kim Witte, Ph.D. Center for Communication Programs Johns Hopkins University 1485 Sylvan Glen Okemos, MI 48864

Bryan B. Whaley, Ph.D. Department of Communication Studies University of San Francisco San Francisco, CA 94117

Henry N. Young, Ph.D. Center for Health Services Research in Primary Care University of California, Davis Davis, CA 95616




I Issues in Provider-Recipient Communication


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The First Three Minutes Donald J. Cegala Ohio State University

Mr. Smith has been experiencing lower back pain for a few weeks and finally decided to see his primary care physician because the pain was getting to be more than he could tolerate. Following is the first part of his interview with his doctor: 1 Doc: 2 Pat: 3 Doc: 4 Pat: 5 6 Doc: 7 Pat: 8 Doc: 9 Pat: 10 11 Doc: 12 Pat: 13 Doc: 14 15 Pat: 16 17 Doc: 18 Pat: 19 Doc: 20 Pat: 21 Doc: 22 Pat: 23

Well, good morning Mr. Smith. How are you today? Not too bad. How are you? I'm fine, thanks. What can I do for you today? Well, Dr. Jones I've been having this terrible pain in my back. It just, I can't even... Back pain. Exactly where is the pain? Right here (pointing to the left side, lower back). Does it hurt any place else? Not in my back, but I do have a pain in the back of my leg, all the way down to Mm, I see. How long have you had this back pain? Oh, about two weeks I think. It just Did you do anything to bring it on, like lifting a heavy object or anything like that? No not that I can remember. I was just sitting in a chair and all of a sudden I started feeling this pain in my back and Is the pain sharp or dull? Oh, real sharp. Like a knife. And is the pain steady or intermittent? It's pretty much constant. Anything make it feel better or worse? Well, almost nothing makes it feel better—I've taken lots of aspirin but that doesn't seem to help much. Sitting definitely makes it worse, at least more so

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24 25 26 Doc: 27 28 Pat:

than walking. But, I'm having a hard time walking too and with all that's going on I just can't How much aspirin have you been taking? Have you been taking anything else with it? Let's see I think I've been taking about

PHYSICIAN-PATIENT COMMUNICATION Scholars have been studying physician-patient communication for at least 30 years. There is an enormous literature on many aspects of how physicians and patients communicate, as well as considerable research on communication skills training for physicians and patients. Among other things, this work has led to the development of various models of physicianpatient communication. Over the last 50 years, these models have evolved from paternalistic approaches in which the physician is characterized as a benevolent all-knowing father figure directing a passive patient to more current views in which the physician-patient relationship is defined by mutuality and partnership. Although there is some evidence that actual physicianpatient relationships have changed over the years to reflect many features of scholars' models, there is also scholarly and anecdotal evidence indicating that there is considerable discrepancy between actual physician-patient communication and current ideal models based on mutuality and partnership (Braddock, Edwards, Hasenberg, Laidley, & Levinson, 1999). In short, there is yet much work for both physicians and patients to do to bring significant change and improvement to the quality of physician-patient communication. The goal of this case is to draw attention to ways of changing and improving the first three minutes of physician-patient interviews. This is an important goal, as research shows that most of what goes wrong in a medical interview is often keyed to what happens or does not happen at the beginning rather than the middle or end of the interview. Even so, improving the first three minutes of medical interviews is only a first step. However, because of space constraints, only issues relevant to the first three minutes of the interview will be addressed here.

KEY PHYSICIAN SKILLS In this section, the literature on physician-patient communication is used to characterize what is good and poor communication on the physician's part in the aforementioned snippet. Dr. Jones did well in greeting the patient by using his name and being friendly (assuming that his nonverbal communication matched the text, e.g., he smiled and perhaps touched or shook hands with Mr. Smith). There is just one small point where Dr. Jones could improve. In line 1, he said, "How are you today?" It is good that Dr. Jones asked the patient how he was feeling, but the specific wording of his statement is a bit too broad. For example, one could easily imagine a moderate-to-long reply from Mr. Smith that had little or nothing to do with the medical reason(s) for his making the appointment. Thus, Dr. Jones' statement invites a potentially moderate-to-long response from Mr. Smith that might be time-consuming and not directly relevant to the business at hand. A better opening statement might be something like, "Good morning, Mr. Smith. It's nice to see you again." Dr. Jones interrupted the patient several times (lines 5/6, 10/11, 12/13, 16/17, 25/26). The timing of these interruptions potentially has a significant impact on the course and even outcomes of the interview. For example, in 1984, Howard Beckman and Richard Frankel published what is now considered a classic study of the first few minutes of physician-patient interviews (Beckman & Frankel, 1984). The results of their work were so dramatic that, 15 years later,

1. THE FIRST THREE MINUTES

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their study was replicated and published in a leading medical journal with similar findings (Marvel, Epstein, Flowers, & Beckman, 1999). Both of these studies found that in most medical interviews, patients were interrupted within just 18 to 23 seconds after the interview began. Moreover, the majority of interruptions occurred on the patient's first expressed complaint, and only a very small percentage of patients (about 2%) ever completed their agenda (i.e., why they were there) once they were interrupted. The true significance of these findings is probably not immediately apparent to most people because their implications are tied to other research about physician-patient communication that may not be widely known to the general public. For example, in our modern, highly technological society, it is easy to think of medical care in terms of sophisticated tests, marvelous surgical procedures, and high-tech machines like computed tomography and positron-emission tomography scanners. But the fact of the matter is that most decisions about diagnosis and treatment (such as deciding to order a test or procedure) are made on the basis of what patients report to physicians about their medical conditions. Indeed, research shows that up to about 80% of such medical decision making is based on information the patient provides during history-taking and reporting of symptoms. Accordingly, anything that prevents patients from completely expressing their agenda during medical interviews can potentially jeopardize the accuracy of diagnosis and treatment plans, and, ultimately, patients' health and safety, to say nothing of the potential for malpractice suits and other factors that contribute to escalating health care costs. There are additional reasons the results of these studies are so important. It was found that physicians tended to interrupt patients on hearing their first expressed concern. Research shows that the first expressed concern often may not be the most medically important matter or even the primary reason the patient came in to see the physician. When physicians immediately begin asking closed questions1 about the first expressed concern, they risk taking the interview down a narrow path that may miss the real reasons a patient made the appointment. Thus, if physicians use an interview style like the one illustrated previously, they may not determine the patient's real reason for the appointment or may only learn of it at the very end of the interview. Yet, there are potential serious problems with this interview style, even if the patient's first expressed concern is most medically important and is the primary reason for the patient making the appointment. Note how Dr. Jones conducts the interview on hearing that Mr. Smith is experiencing back pain at line 6. Dr. Jones' questions are not only closed, they are biomedically focused, that is, they are directed to the physical causes and systems involved in the patient's likely medical problem. Although biomedical information is essential to an accurate diagnosis and treatment plan, it is often not the only essential information relevant to accurate medical decision making. Patients, especially those with chronic conditions, often not only have a physical ailment but also have life experiences associated with the disease. Some people say this is the difference between a disease and an illness. If a physician only gathers information about the patient's disease without also understanding the broader context of the patient's medical problem, the chances are that vitally important information will be missed and the accuracy of the physician's diagnosis and treatment plan can be seriously jeopardized. Dr. Jones' questions reflect how most physicians are trained in medical school. The questions are designed to elicit specific information about the patient's symptoms so that the physician can determine a diagnosis and treatment plan. Thus, the purpose of closed, biomedically focused questions is well intended, but there is a more appropriate place in the interview for asking such questions. At this point, in the very beginning of the interview, it is more important to determine the patient's complete agenda. Once all of the reasons for the patient's visit are identified, the physician can better determine (with the patient's agreement) which agenda items are most important to address and then can begin doing so in greater detail.

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If we consider the critique of Dr. Jones' communication and the discussion of research findings underlying the critique, what might a "corrected" dialogue look like? 1 Doc: 2 Pat: 3 Doc: 4 Pat: 5 6 Doc: 7 Pat: 8 9 10 Doc: 11 Pat: 12 13 14 Doc: 15 Pat: 16 17 18 19 20 21 22 Doc: 23 Pat: 24 Doc: 25 26 Pat: 27 Doc: 28 Pat: 29 30 31 32 33 34 Doc: 35 36 37 38 39 40 41 42 43 Pat: 44 Doc: 45 46 47 Pat:

Well, good morning Mr. Smith, it's nice to see you again. Hi doctor Jones. It's good to see you too. What's on your agenda today? Dr. Jones I've been having this terrible pain in my back. It just... I can't seem to get it to settle down. It just hurts a lot. I see. What else can you tell me? Well, let's see. It started about two weeks ago. I was just sitting at my desk and all of a sudden I got this shooting pain in my back and it's been hurting ever since. Um hum (2 second pause) And, well my leg hurts too. I have this sharp pain running all the way down the back of my left leg. I've been taking lots of aspirin, but that doesn't seem to help much. Help much? It seems to ease the pain somewhat, but I've been taking so much that I think it's starting to bother my stomach. Besides it doesn't suppress the pain enough for me to do my regular activities. It's just been awful the last few weeks. I can't sit at my desk and work for more than 20 minutes at a time because it hurts so much. I'm losing a lot of work time and my productivity has fallen drastically. If I don't get rid of this pain soon, I'm afraid I'll never catch up with my work. I've got too much to do to put up with this. I see. Anything else you can tell me? I don't think so, that's about it. Are there any other things you wanted to discuss today besides your back pain? No, that is the main thing. Sure there's nothing else, nothing else at all? Well not as far as additional complaints, but I am really worried about this back. My father had back problems when he was about my age and I saw him suffer for years. He finally got back surgery and his pain was even worse after the surgery. Eventually he had to quit work and go on disability. He was just plain miserable. I'm really worried that the same thing is about to happen to me. I just can't afford for that to happen. OK, let me make sure I have heard everything correctly so far. You have been in a lot of pain for about two weeks. In addition to pain in your back, you have pain all the way down the back of your left leg. You have been taking aspirin, but it doesn't help much, and you think that the amount of aspirin you've been taking may be upsetting your stomach. Your pain is disrupting your work schedule because sitting is very uncomfortable. You are concerned about losing needed work time, and you are worried that you may have back problems similar to your father's. Does that pretty much sum up the situation, or did I leave out something? No, you have summarized all of the key points correctly. OK, I will need to ask you some more questions about your pain and examine you. But, before doing that I want to be sure there isn't anything else that comes to mind that you want to share at this point. Anything at all? No, that's it.


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Dr. Tone's interviewing style changed in significant ways to reflect the research findings discussed earlier. For one thing, Dr. Jones did not immediately begin asking closed, biomedically focused questions on hearing that Mr. Smith was experiencing back pain. Instead, Dr. Jones began with an open question that encouraged Mr. Smith to talk (line 6). Then, at line 10, Dr. Jones used a continuer and silence to encourage Mr. Smith to continue with his story. At line 14, Dr. Jones simply repeated a key term in Mr. Smith's previous turn to urge him to talk more about the effects of taking aspirin. In two subsequent turns (lines 22 and 27), Dr. Jones asked open questions to see if there was anything else Mr. Smith wanted to add. At lines 34 to 42, Dr. Jones summarized all of the key information Mr. Smith provided, including his worries about missing work and a family history of back pain. Finally, Dr. Jones assured Mr. Smith that he would soon attend to his back problem by asking more questions and doing an examination, but before doing so, he wanted to be sure there wasn't something else Mr. Smith wanted to say. This is a very different interview style than illustrated in the first snippet. Not only did Dr. Jones' communication style change, but so did Mr. Smith's. Mr. Smith not only provided much of the same detail about his back pain that he did in the first snippet, he also provided additional specifics, such as side effects from taking aspirin, the amount of time he can sit before being overcome with pain, his anxiety about losing work time and feeling pressure to resolve his pain before he falls too far behind, and his worries about his father's experiences and the fear of that happening to him. Overall, by using a patient-centered style of communicating Dr. Jones obtained far more information about Mr. Smith's illness than was elicited using the doctorcentered style in the first snippet. Not only did he obtain more information, but the quality of the information was significantly better. For example, by understanding Mr. Smith's fears about him ending up like his father, Dr. Jones can address those concerns after the examination. He might, for example, find that Mr. Jones' problem is muscular and not disc-related, and therefore he does not need surgery. Or, if surgery is indicated, Dr. Jones can explain that surgical procedures and overall treatment of back pain have improved dramatically since his father had back surgery. In short, Dr. Jones can find ways to reassure Mr. Smith and help to ease his anxiety and fears, which incidentally are probably adding to Mr. Smith's physical aliment. Normally, when using this patient-centered interview style, a physician would need to negotiate an agenda for the appointment because often patients want to discuss more items than a typical 15-minute appointment can accommodate. In this instance, that was not necessary because Mr. Smith had only one complaint. Unfortunately, there is not enough space to consider what should happen during the rest of Mr. Smith's interview. Suffice it to say, immediately following the first 3 minutes, Dr. Jones would need to explore Mr. Smith's condition in greater detail. Ultimately, he would ask closed questions to clarify points and to explore areas that Mr. Smith had not mentioned, but Dr. Jones should continue to seek information in a patient-centered style, allowing Mr. Smith to tell his story as completely as possible. After the examination, Dr. Jones should urge Mr. Smith to be involved as much possible in discussion about the diagnosis of his problem and what can be done for it, and Dr. Jones should be as clear and informative as possible about the diagnosis and prognosis of the problem and possible treatment options for addressing it. Before turning briefly to patient communication responsibilities, it may be useful to close this section by addressing an important additional matter regarding the first and second snippets. It has been suggested that the interviewing style illustrated in snippet two is more communicatively effective and results in better health care than the style characterized in snippet one. However, it is also clear that snippet two is noticeably longer than snippet one, in fact about 34% longer. Anyone familiar with issues about escalating health costs recognizes that increasing demands on physicians' time contributes to rising health care costs. Thus, it is fair to ask whether a more open interview style will contribute to escalating health care costs. The simple

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answer is "no." Remember that only the first 3 minutes of the medical interview have been considered, and only one case has been illustrated. What a physician does communicatively during the first 3 minutes of the interview has a significant impact on the rest of the appointment. Indeed, the investment of an additional minute or so, if that is even needed, can make a difference in several minutes later on in the interview. Most of the research on physician and patient communication skills training indicates that patient-centered interviewing on the physician's part and active participation on the patient's part does not significantly increase the length of medical interviews, especially once the relevant communication skills have been mastered.

PATIENT COMMUNICATION RESPONSIBILITIES So far, the focus has been on what physicians can do communicatively to improve medical interviews during the first 3 minutes. As already suggested, there is considerably more that can be said about how physicians should communicate during the rest of the interview. However, like any communication event, the process and outcomes of physician-patient encounters are a function of what both physicians and patients communicatively contribute to the event. Clearly, Mr. Smith's discourse style changed from the first to the second snippet, but most of that is attributable to the change in the physician's discourse style. There is some literature on the effects of patient communication skills training that suggests how patients can contribute to more effective medical interviews (Anderson & Sharpe, 1991; Cegala & Lenzmeier Broz, 2003). This literature was not addressed here because the most significant patient contributions to medical interviews usually occur after the first three minutes, specifically during the historytaking stage (immediately following the first three minutes) and during the postexamination stage. The three key patient communication competencies for these stages of the interview are: (a) providing detailed information about family history, current symptoms, and psychosocial experiences (e.g., problems, anxieties, or worries related to home, work, and/or social environments); (b) asking questions about diagnosis, prognosis, tests and procedures, and treatment options; and (c) expressing opinions and concerns about such matters as treatment plans. The following Web site contains specific information and guidelines about patient communication skills: http://patcom.jcomm.ohio-state.edu. The reader is urged to access the Web site and consider what patients' communicative responsibilities are and how they can best help to improve physician-patient communication. In doing so, keep in mind the basic principle expressed earlier: The process and effects of all interpersonal communication are functions of the participants' communicative contributions. Thus, when considering ways to improve physician-patient communication, one must consider the discourse moves of each participant and how those implied meanings affect the conversational partner and the definition of the situation at hand.

RELEVANT CONCEPTS Biomedical: The physical causes and systems involved in a patient's medical problem. This is in contrast to social and psychological aspects of illness. Disease vs. illness: A disease is the physically based aspect of a medical problem, such as the biological causes of diabetes or high blood pressure. An illness is concerned with how the patient lives with a disease, that is, how the disease affects the quality of life along psychological and social lines. Open vs. closed questions: Open questions do not imply a specific answer; instead, they allow the respondent to elaborate as desired in formulating a reply to the question, such


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as: What was your childhood like? Closed questions prompt brief, specific replies, such as: What is your age? Patient-centered interview style: This is a communication style that reflects patients perspectives on their illnesses. It includes allowing patients to tell their stories without interruption, using open-ended questions, gathering information about the patient's views of the illness and what can be done to treat it, and in general engaging the patient in a partnership characterized by information exchange and negotiation. Patient communication skills: These are communication tactics that patients use during a medical interview. They include such moves as asking questions, providing detailed information about symptoms and history, verifying understanding of information that is given to them, expressing concerns, and offering opinions.

DISCUSSION QUESTIONS 1. How would you characterize the first physician-patient interaction based on your experience as a patient? Would you say it was typical? If so, why? If not, what is different here? 2. Why is it so important for physicians to use the type of interview style discussed here in the first 3 minutes? What kinds of things can go wrong during the first 3 minutes? How might these events impact on the rest of the interview? 3. Under what circumstances might a physician interrupting a patient or a patient interrupting a physician be viewed positively, or at least not negatively? What aspects of the communication situation are likely to influence participants' views? 4. One of the key communication skills a physician needs is to gather information about the patient's symptoms and, in general, the patient's medical problem. How do open and closed questions relate to the physician's information gathering? Are closed questions necessarily ineffective, or are there places in the interview where they are useful? Are open questions necessarily always preferred, or are there instances where open questions might be ineffective? 5. What communication responsibilities do patients have in a typical medical interview? Why are these communication skills important to the effectiveness of the interview?

ENDNOTE 'Closed questions project to brief, structured answers. For example, the question, How old are you? projects to an answer like "25." This is in contrast to open questions that do not restrict the amount of detail the responder provides in answering the question, such as, "Can you tell me about what it was like when you were growing up?"

REFERENCES/SUGGESTED READINGS Anderson, L. A., & Sharpe, P. A. (1991). Improving patient and provider communication: A synthesis and review of communication interventions. Patient Education and Counseling, 17, 99-134. Beckman, H., & Frankel, R. (1984). The effect of physician behavior on the collection of data. Annals of Internal Medicine, 101, 692-696. Braddock, C. H., Ill, Edwards, K. A., Hasenberg, N. M., Laidley, T. L., & Levinson, W. (1999). Informed decision making in outpatient practice: Time to get back to basics. Journal of the American Medical Association, 282, 2313-2320. Cegala, D. J., & Lenzmeier Broz, S. (2003). Provider and patient communication skills training. In A. Dorsey, T. L. Thompson, K. Miller, & R. Parrott (Eds.), Handbook of health communication (pp. 95-119). Mahwah, NJ: Lawrence Erlbaum Associates.

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Emanuel, E. J., & Emanuel, L. L. (1992). Four models of the physician-patient relationship. Journal of the American Medical Association, 267, 2221-2226. Marvel, M. K., Epstein, R. M., Flowers, K., & Beckman, H. B. (1999). Soliciting the patient's agenda: Have we improved? Journal of the American Medical Association, 281, 283-287. Silverman, J., Kurtz, S., & Draper, J. (1998). Skills for communicating with patients. Abingdon, UK: Radcliff Medical Press.

Additional Resources Buckman, R., Baile, W. F., & Korsch, B. (1999). Communication skills in clinical practice. Communication: The basics (Tape 1). Toronto, CA: Medical Audio Visual Communications. Smith, R. C. (2002). Patient-centered interviewing: An evidence-based method (Tape 1). EastLansing, MI: Instructional Media Center, Michigan State University, http://patcom.jcomm.ohio-state.edu

2 Staying Out of the Line of Fire A Medical Student Learns About Bad News Delivery Teresa L. Thompson University of Dayton Catherine Gillotti Purdue University, Calumet Sitting in her first med school class, Christie glanced around at all the other students who were positioned near her. She wondered what had prompted them to attempt the arduous process of becoming physicians. Probably different reasons for different people, many of them subsumed under the umbrella of "helping people" in one way or another, she suspected. She thought back to the day in high school when she had decided to become a doctor. She and her mother had been sitting at the kitchen table, chatting about the dance to which she had gone the night before, when her older brother, Matt, had called. She remembered her mother almost shouting into the phone, in frustration. Matt: Hi Mom. Mom: Hi Matt. Are you okay? You don't sound like yourself. Matt: No. Not really, I just got some bad news. I didn't tell you and Dad about it before now because I didn't want to worry you. Mom: Tell us what? Matt: I had some tests run by my family physician because I was getting light-headed and feeling some chest pain. Mom: Matt, why didn't you tell us? Matt (in frustration): I told you, I didn't want to worry you. Mom: What tests did he order? Matt: He did an EKG. Mom: What did the results show? Matt: Well, Dr. Shaker's medical assistant (MA) called me today. Mom: A medical assistant called? When did you go to the doctor? Matt: I had the tests done last Monday. Anyway, I couldn't get anything out of this person other than that I now need to see a cardiologist. Mom: Did you get a chance to talk to Dr. Shaker? Matt: No, they said that he was unavailable because it's Saturday. 11

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Mom: What did the MA say? Matt: She said that the test results showed some abnormalities and that I would need to see a cardiologist in the coming weeks. I asked to speak to the doctor. He wasn't available. And then I asked her to be more specific about what 'abnormalities' there were. She said that she could not interpret the results, but was told to call me with the news. I told her sarcastically that didn't help me much. Mom: This is not how it's supposed to be done, Matt. I can tell you as a triage nurse for more than 25 years that we would never call a patient on the weekend with any kind of news that might be perceived as bad unless it were an emergency. Matt: Do you think I need to go to the ER? Mom: No. The MA would have instructed you to do so if it were an emergency. But are you having any symptoms? Matt: No. I feel fine except for not knowing what any of this means. Mom (sighing with relief): Come on over, Matt, and we can talk more. His mother collapsed at the table with her head in her hands. Matt came over later that day, and they all sat around in frustration, complaining about how this potentially bad news had been delivered and speculating about whether there was cause for worry. Christie's mom kept pointing out that Matt should have received the news from his physician, not from the MA, and should not have received a call at home on a Saturday, when he couldn't get any additional information. Although they felt great concern about Mart's condition and prognosis, they felt equally great frustration about the lack of information they had at this point and the inability to acquire more. Christie remembered thinking, "When I become a doctor, I'm going to make sure that news like this is given to people in a way that doesn't make a bad situation even worse!" Although she had been thinking about medicine for some time, that was the first time she recalled saying to herself, "When I become a doctor — " Mart's subsequent visit to the cardiologist resulted in yet more bad news. On Monday, Matt called his primary care physician's office, who scheduled an appointment with a highly recommended local cardiologist. Matt had to wait several days to see this doctor—several days that were characterized by much anxiety and uncertainty. The doctor seemed to be a good one, however, so the family was hopeful that more information would shortly be forthcoming. The cardiologist, Dr. Schmitz, scheduled a series of tests for Matt, including a thallium stress test, an EKG, and some blood work. After these results came in, a heart cathertization was scheduled. Still feeling as if they had no idea of the extent of Mart's problems, the family waited anxiously outside the room in which the procedure was being conducted, hoping for some information. Mart's wife, Emily, was invited inside the recovery room after the procedure, while the remainder of the family continued to wait outside. Matt was still groggy from the catheterization, so Emily tried to focus on understanding the diagnosis and treatment plan. But she had difficulty doing so, as Dr. Schmitz told her a lot of things very quickly. It appeared that Matt didn't have any blockages to the heart, which was good news. Mart's mother was relieved because Matt was so young, and she knew all too well after being a nurse that the more invasive the procedure, the harder the recovery. In Mart's case, the heart itself looked enlarged. "It's his weight," Dr. Schmitz, said, "His heart looks like a Volkswagen engine that been pulling a Mac truck!" That analogy, of course, alarmed Emily. Dr. Schmitz ignored the alarmed look on Emily's face and went on to tell her about several different kinds of medication that Matt should take, how he should change his diet, the kind of exercise routine he should undertake, that his cholesterol and blood pressure were too high, and on and on. Then he added, "If he

2. BAD NEWS DELIVERY

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doesn't get this under control, his heart may just give out." Matt understood very little of this following the procedure, except the last statement, and Emily felt so shaken up by the news that she, too, could process only limited bits of the information. Whereas the rest of the family was both worried about Matt and critical of how the doctors had handled the whole bad-news delivery process, Christie's older brother, George, had a different attitude. "I think doctors should just be blunt—just tell everybody the truth whenever they know anything. Don't worry about being tactful or nice about it—I'd just want to know as much as possible as soon as possible. I don't care how they say it." "Easy for you to say now," replied Christie's mom, "while you're healthy and strong. See if you feel that way if you're lying on some table, half out of it, and told that you're likely to die!" These experiences stayed in Christie's mind. Although delivering bad news more effectively was not the only reason she had decided to become a doctor, it remained an important one for her. She was determined to try to learn what she could during her med school years so that, when the time came, she didn't devastate or overwhelm families in the way that her's had been affected by the delivery of the news about Mart's heart problems. As Christie continued her medical school career, she found opportunity after opportunity to first observe and then practice bad-news delivery. For the most part, she did not find models for delivering bad news very helpful. Her observations of practicing physicians included seeing the elderly Dr. Gumperz tell a middle-aged man, after surgery, "Well, Phil, you've only got one kidney, but it's a big kidney!" She saw a cardiologist go out to the waiting family of a patient who had just died on the operating table and heard the physician tell the family, "I'm afraid that things aren't going very well," only to come back shortly and tell them that the patient had indeed died. Christie was explicitly taught by most of her instructors to maintain emotional distance from her patients and not to show emotions toward them. One attending physician, with whom she did rounds on a regular basis during her first year of residency, harped on this point all the time, "You can't afford to get emotionally involved with your patients. You can't care for them, or you'll burn yourself out. You have to keep yourself distant from them. Don't let yourself care. Don't act like you care." Not showing emotions, however, resulted in a cold, unfeeling practice of medicine and communication of bad news to patients, and Christie rejected that approach. She felt that there are some times when you stop being a doctor and start being a person. She felt even more convicted about this when she read an ethnography about medical school students written by an author named Fred Hafferty (1989). She was halfway through the book when she phoned her mom for their weekly check-in call. Mom: Christie: Mom: Christie:

Hi, Christie! How are you doing? I'm doing well, but I'm tired as usual. Are you getting enough rest? Mom, you know what the life of a resident is like. You get to sleep 10 minutes here and 10 minutes there. Mom: Well, I just hate to hear that you are over-worked and over-stressed. Besides, it's my right to worry about you—that's what mothers do. (They both laughed.) Christie: Well, I suppose it is your God-given right. Hey mom, I have to tell you about this book I'm reading. Mom: Yeah? Christie: It is called Into the Valley. The author, Hafferty, followed a class of medical students through an entire year of study. He focused on their perceptions of their anatomy class and interviewed the students about their feelings about working on cadavers. Some of the students admitted having waking hallucinations about their cadavers. They talked about seeing them in public places.

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Mom: Well, I remember you complaining about the smell of formaldehyde during the year you had anatomy, but I don't remember you talking about seeing your cadaver walking around campus. Christie: No, I didn't hallucinate about them but some of my classmates said they did. It was hard getting used to working on our cadavers. Most of us named them. Anyway, one student whom Hafferty interviewed actually said that if he saw a dead animal and a dead body on the side of the road, he would want to treat them the same. Can you believe he actually said that on the record? Mom: Well, yes I can. I have worked with some really pompous and cold-hearted physicians over the years. Then again, I have worked with some really compassionate and empathetic ones as well. Christie: That's true, Mom. You probably have worked with dozens of physicians like this over the years. I promise you, though, I won't become that kind of unfeeling physician. Mom: I could never imagine you being that detached. Christie: I can't imagine wanting to continue to practice medicine if I don't connect with my patients on a human level. Mom: What did the author conclude from this study? Christie: Well, I'm only halfway through the book, but he claims that physicians are socialized to dehumanize patients because technically their first patient is a cadaver. Mom: What do you think of that? Christie: Well, as a resident I would say that not all physicians dehumanize their patients. At the same time, his point is well taken because our professors in medical school stress not becoming too attached to our patients. Well, Mom, I guess I should get back to it. Thanks for the check-in. Mom: You know I love hearing from you. Thanks for calling. Get plenty of rest, Christie. You'll be a better doctor for it. Christie: I will. Give my love to everyone and talk to you soon. Mom: I love you, too. Have a good week. Some doctors Christie observed tried to deliver bad news in a way that didn't devastate families or patients, but ended up doing as much harm as good through inappropriate attempts at reassurance. Christie had never realized how discontinuing reassurance could be until she saw Dr. Eviston, a new attending at the hospital, try to be overly encouraging and jolly when she told a patient about her breast cancer, "All right, Lynn, you've got breast cancer. But we'll lick this! Don't you worry. Everything's just fine!" It then hit her that acting like something wasn't really bad when it was indeed bad disconfirms the patient's feelings and experiences of reality. Christie also discovered some other things related to the use of language and other problems in bad-news delivery as she spent more time around health care. Christie: You know, Mom, I can't believe how some of these doctors I work with use such ambiguous and euphemistic language with patients. I heard one physician tell a patient that their "loved one had gone on to a better place" instead of saying that she had indeed died. Mom: Well, maybe the doctor was trying to soften the blow. Christie: Well there is being compassionate, but there's something to be said for being up-front and factual. And then there was the time that Dr. Goetz told a man his diagnosis of inoperable cancer by asking him if he had his affairs in order?


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Mom: That is definitely evasive. Christie: I think the worst experience I have seen of good news that sounded like bad news was a urologist who had just performed a dilatation on a 24 year old woman. She had feelings of urgency and pressure and had a history of urinary tract problems. You know how painful that procedure is. Mom: I certainly do. It's very painful. Christie: Well, as soon as the physician completed the procedure he said to her, "That didn't need to be done." The patient was visibly upset. She asked, "What do you mean that didn't need to be done?" He said, "The only way to know whether a dilatation is required or not is to do one." Now what made this really bad was that he told her this while standing with his hand on the door—ready to walk out of the room without giving her any alternative explanations for what might be causing her problem. Mom: What did you do? Christie: I stayed in the room with her after the other physician left and talked to her about other possibilities. In the end I recommended she see her GYN since the patient could track the symptoms to her menstrual cycle. Mom: I'm sure she was happy you were there to help her. Christie: I think the physician was too detached and not attentive to what the patient was really asking for, which was not a definite answer but at least some form of validation that her symptoms weren't a figment of her imagination. During Christie's ER rotation, a young man, 25, was brought in because of injuries he suffered during an automobile accident. Despite the staff's attempts to save his life, Jason was declared brain dead. They kept his body alive through life support while they attempted to secure consent for organ donation from the family. The attending physician on that shift took it upon himself to ask Jason's parents for permission for organ donation. Jason had signed his driver's license, but family consent also is required. Jason's parents were confused when the physician said, "I'm sorry to tell you that your son is brain dead, and by law I'm required to ask your permission to donate Jason's organs." The Organ Procurement Officer, Anne Bennett, had a thing or two to say to this physician later. She reminded him that it is not the physician's legal responsibility to ask for the permission for the donation—it is the responsibility of the Organ Procurement Officer. Christie was able to witness the procurement process from start to finish on this case, and gained a new alliance and friendship with Anne Bennett. One day, Anne and Christie went to lunch together in the hospital cafeteria. Christie: What is the worst delivery of brain death news you have witnessed Anne? Anne: Actually it was that ER case you worked on a month ago—you know Jason, the young man who died in the automobile accident. Christie: Why was that the worst example? Anne: First because the physician violated his role in the procedure. He is supposed to deliver the news, but not request the organs. Second because he didn't allow for the decoupling process to occur. Christie: What's decoupling? Anne: Decoupling is the separation of the delivery of the news—death—from donation. Our philosophy is that there needs to be a distinction in time between telling the family that their loved one is dead and seeking procurement of the organs. Additionally, it's a conflict of interest for him to make the donation request. It's really our legal responsibility to seek consent. Christie: How would you rate the physicians at this hospital in delivering the death news?

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Anne: I would say they're about average. You would be shocked at the number of families who misunderstand what brain death means. Christie: Misunderstand in what way? Anne: They often confuse brain death with coma. I would estimate that five out of ten families are confused. They often don't understand that the person is dead and if they refuse donation, by law, the life support will be turned off. Christie: Do you feel it's the physicians causing this confusion? Anne: Sometimes it is because, in my opinion, it's all in the delivery of the bad news. Some physicians hide behind the medical terminology during the delivery and explanation of brain death. I mean who really wants to be the one to tell someone that we didn't save your loved one?

SOME GOOD EXAMPLES There were some health care providers whom Christie had an opportunity to observe who inspired her, however. Dr. Chapman, she discovered, always began bad news delivery with a variation on the words, "I'm really sorry " More broadly, Dr. Chapman and other good doctors continually showed caring and compassion throughout their interactions with the patient and family, while still telling them the truth. Those physicians who communicated the bad news more neutrally or in a matter-of-fact manner tended to have patients who were more likely to deny the diagnosis and prognosis or experience severe depression and difficulty coping with the illness. Christie had the pleasure of observing one fellow resident who worked very hard to help a young woman in her mid-twenties face her breast cancer diagnosis. The patient had just left her job, so her insurance was about to run out. She had been in denial of a possible problem— a lump underneath her arm. When Christie's colleague, Dr. Jim Franko, completed a breast exam, he not only found a lump under her arm, but also one in her left breast. Jim knew that the young woman must have been in denial because she said that she thought the lump under her arm was caused by an infected hair. He was wonderful with her. He asked her to complete a self-breast exam right then and there in front of him, so that he could get her to acknowledge both lumps. He suspected that they were malignant, so he ordered as many tests as he could for her that same day before her insurance expired. He also set up an appointment the same day with a surgeon and oncologist. He later told me that he didn't want to rush this woman through the diagnosis and treatment process without allowing her time to absorb the news, but also knew that her financial situation would be changing very quickly and he didn't want her worrying about paying for all the necessary tests. In a later phone call home, Christie shared what she had thought was another especially interesting example concerning breast cancer with her mom. Christie: Gosh, Mom, I have to tell you about this interaction I observed the other day. Remember that great Dr. Chapman I've mentioned to you? Well, she was treating this patient in whose breast they'd just found a lump. I just thought she handled a bad situation so well. Mom: How so? Christie: She started by sitting pretty close to the patient, and looking at her directly, with a concerned expression on her face. They call each other by their first names, so Dr. Chapman said, "Joan, I'm really sorry, but I'm afraid that the biopsy showed that the lump is indeed malignant. It's stage 3, which is not as bad as it could be, and we've caught it pretty early. It's not very big, but we do need to attend to it.


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We can handle this. I think we should shrink it with some chemo, then take out the lump, and then follow up with some radiation. I know this isn't good news, but I think we can handle this." Mom: How did the patient react? Christie: Well, of course she was upset, but I think she felt better about having Dr. Chapman as an advocate and encouraged by as much hope as Dr. Chapman showed. Dr. Chapman managed to convey the news without completely devastating the patient or taking away all hope. She gave her the bad news, but then let her know that something could be done about it without giving her so much information that she couldn't process it. Mom: It can't be easy to tell someone they have cancer. It sounds like she handled it as well as can be expected given that no one really wants to be the bearer of bad news. Christie: Yeah, I hope I'm that good when I'm faced with being the messenger. Christie saw that it was possible to communicate bad news while still giving hope to people, because physicians are not all-knowing and can't predict the future with any certainty. Besides that, they are trained to cure, not just treat, and sometimes telling someone they can't be helped by modern medicine feels like a failure on the part of the health care provider. There was one case that moved her in particular. On her first day in the Neonatal Intensive Care Unit, Christie witnessed one of the neonatalogists inform a father that his newborn baby was going to die. He asked the father's permission to cease the life support. Christie was impressed with the physician's demeanor and compassion. He stood very close to the father, touched his arm, and even cried with him. The only thing that Christie would have done differently herself would have been to tell the father in a quiet, private place. The physician broke the news right in front of the nurse's station by the unit's door, with the head nurse and unit clerk standing behind the desk. It was after watching this interaction that Christie realized the many levels there are to bad-news delivery. There is initial bad-news delivery. There is bad-news delivery coupled with requests for organ donations. There is bad news of sudden and unexpected death. There is bad news regarding chronic but treatable diseases, such as diabetes and high blood pressure. There is bad news regarding lifelong genetic disorders found in children. There is also some relativity to bad-news delivery in that what is bad to one person may not be perceived as bad news by someone else. Finally, there is bad news regarding going from curable to incurable states. Through her observation and experiences, Christie found that it was best to communicate bad news slowly and in nonmedical terms, giving limited information at first but with planned follow-up. When she found herself launching into medicalese, she forced herself to think about how her grandmother would process the information she was communicating and tried to phrase things so that Grandma Bess would be able to understand them. It was a balancing act between being clear but not patronizing the patient. She found that it was better to make things too basic and let people indicate to her that they could handle more sophistication than it was to start at too high a level and have people not understand her. Even though she tried to be down-to-earth with her patients and their families, some people were intimidated enough by physicians that they felt reluctant to indicate that they didn't understand what she was saying. Christie found that it was one thing to know what to do, however, and quite another to be able to actually do it. In another call home, Christie shared with her mom one of her early experiences of giving bad news when she was a third-year medical student. Christie: Oh, Mom, I didn't want to do it! I had to tell this young man that he was HIV positive!

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Mom: What did you say? Christie: I was so flustered and upset that I launched right into doctor-talk. I told him that the test results were positive and that we were sure of this because we had run an ELISA test, which is the gold-standard of testing. Can you believe that I said it that way? I was actually upbeat when talking about the quality of the testing, as if he should be excited that we were certain that he is HIV positive. Mom: I'm sure you didn't mean to sound excited about it Christie. Don't be so hard on yourself. Christie: I can barely forgive myself for being so wrapped up in the clinical that I forgot that this man's life will never be the same. Mom: I'm sure that he was more stunned about the news than how you said it. Christie: Mom, that is the point, how I said it may have made a bad situation worse. Mom: Did you ask him how he felt? Christie: Once I took my foot out of my mouth I said, "What this means is that you're HIV positive." He said, "You mean I have AIDS?" I said, "No, it doesn't mean you have AIDS yet, but it does mean that you have been infected with the HIV virus. You could stay HIV+ for years without actually developing any of the symptoms of AIDS, and during that time research may find a cure." Mom: What did he say next? Christie: He still didn't know quite what I meant, and then I started babbling about treatment options and all kinds of stuff that he couldn't possibly understand. I was just terrible. I feel awful. Mom: I still think you're being too hard on yourself. You're just learning, Christie. You'll get better in time and with more experience. Christie: Yeah, but how many lives will I shatter in the meantime? Christie also discovered some things about just why it was so difficult to give people bad news in an effective and appropriate manner. As a fledgling health care provider, she was being trained to cure people, not let them go. Giving bad news goes against all of the reasons that most people enter medical schoo—they want to save people, not tell them bad news. Badnews delivery forced her to focus on her limitations and, ultimately, on her own mortality. She experienced a feeling of helplessness when giving bad news, and she quickly realized that most health care providers have pretty high control needs. That was one of the reasons they went into health care to begin with.

ADAPTATION Christie realized that delivering bad news also requires trying to think about how this message will be received by both the patient and the family. This assessment is not always easy and requires taking into consideration both knowledge about the individual and an understanding of the culture from which the individual comes. She learned that some cultures perceive that the sharing of bad news functions to bring about that bad news. She told her mom about one Navajo woman she treated who wouldn't let her even finish her sentence. Christie: So, Mom, I started saying, "I'm afraid I have some bad news. The tests show that your cancer has progressed far beyond what we had originally thought. I'm afraid that..." and the woman said, "No!" So I said, "I'm sorry?" and she said, "No, don't say anything more," and I kind of blubbered a bit. Mom: Didn't she want to know the status of her health?


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Christie: I found out later that most Native Americans prefer story-telling and reliance on metaphors to direct communication about illness. Christie's subsequent experiences taught her that many other cultural groups share this aversion to direct communication about illness. Apart from cultural adaptation requirements, she also found that some people immediately want lots of information, but that most people need time to just absorb the initial diagnosis before they can process the details of the prognosis and treatment plan. Individuals differ in how much uncertainty they can tolerate and how much information they can process at once. So Christie discovered that this whole bad-news delivery job is much more complex than she had first imagined. Although Christie knew that too much information when initially delivering bad news was counterproductive and overwhelming, she also came to see how information helped people cope with bad news, pain, and illness. Her mom agreed with her assessment. Christie: It's fascinating, Mom. I saw these two kids undergo the same procedure this week. One of them was with Dr. Miller, who didn't tell this poor kid anything about what was going to happen to him. The little guy got hysterical when he saw this massive equipment surrounding him and felt the doctors begin poking and prodding. The other boy was a patient of Dr. Chapman's. She told him everything that was going to happen before he experienced it. The boy didn't like it—it's a very uncomfortable procedure—but he stayed calm and handled it all. Mom: Every child is different, just like every adult. Some people want to know the most minute details and others don't want to know anything. It's a hard call sometimes. But you're right that information helps coping more often than not. Christie: Maybe it's just the difference between these kids, but I think it takes an effort from us to find out what each patient wants.

READING THE RESEARCH In addition to observing bad-news delivery, Christie found an opportunity to read literature on the issue. Most of this writing fell into the "how-to" category rather than being based on empirical examination or theoretical framing of the topic. The empirical research she did find typically looked at the impact of bad-news delivery training programs on satisfaction levels and perceptions of effectiveness, but didn't test to see if the programs had any real impact on how subsequent bad news was delivered and on real-world outcomes of this delivery. She found several recurring themes in the literature, however. She discovered that, according to the academic experts, her mother had been right—it should be the treating physician who delivers the bad news—not anyone else, even though the research recounts many instances when the job is deliberately or inadvertently handed off to someone else. She observed another example of this with a family who was told by a hospice worker, "Honey, she's dyin'—that's why her body's doing those things." Although the family knew that the woman was terminal, or she wouldn't have been in hospice, they were shocked to receive the news of imminent death in this way. Not having heard the news from the physician, they didn't know whether to believe it. As it happened, they didn't take her seriously, and only the hospice worker was with the woman when she died later that day. Some writers on the topic suggested starting with a "warning shot," to let the patient know that bad news is coming. Yet others reminded care providers to give the news at a pace at which the patient or family can best process it, which might be slower for some people and faster for others. Many urged trying to pick up on cues from the patient in regard to all of

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these issues. Christie saw Dr. Chapman do this on repeated occasions. She would see Dr. Chapman look at the patient and the family intently, and then begin to slow her rate of speech and repeat important points. With other families, Dr. Chapman would notice that they were nodding attentively, as if they understood, and she would begin to explain things in more detail. Christie observed other doctors who seemed completely oblivious to the cues of the patient or family. They'd continue rattling on, even though it was obvious to Christie that the patient and the family were lost, or they'd plod along slowly with a family that, it seemed to Christie, was following well and could handle more information at a faster rate. As she talked to her mom about all of the research she had been reading, she wondered aloud, "You know, there's all this writing about bad-news delivery, and all this work on it. I did this search on Medline and found over a hundred articles on it! So, with all these experts telling us what to do, how come so few people do it well?"

STORIES As Christie moved into her rotations, internship, and residency, she found not only plenty of opportunities to practice bad-news delivery, but also heard plenty of stories from patients about ineffective bad-news delivery from other care providers. Frankly, she didn't hear a lot of stories about particularly good bad-news delivery because people didn't tend to share those stories. Those people who had been the recipients of effective delivery also didn't tend to leave their physicians as frequently and seek a second opinion as did those to whom the information had been ineffectively communicated. Nor, the literature told her, did they file malpractice suites as frequently. She was quite interested to discover that it was rare for malpractice suits to be filed based solely on medical malpractice. Most of the suits were characterized by some kind of perceived medical malpractice coupled with a lack of information or a lack of caring communication from the health care provider. She told her mother: Christie: Mom, I had a patient come right out and tell me, "I wouldn't have sued him if he'd even acted like he cared about his mistakes or about me. But he was just so darn cold about the whole thing. People like that shouldn't even become doctors." As she progressed through medical school, Christie also noticed something interesting occurring among her cohorts. Christie: You know, Mom, it's like they're all cookies from the same cutter. We had that one lecture in that doctor-patient relations class about bad-news delivery. First of all, the professor, a medical doctor, was basing his recommendations on one source of information, and then he likened communicating with patients to moving a barge. Mom: He what? Christie: He basically acted like patients need to be led by the hand in the interaction. Mom: Obviously, he has a very high opinion of himself and not much faith in his patients. Christie: What I found to be problematic was the advice we were given. He gave us a series of rudimentary steps on carrying on a conversation as if we have never done that before. Mom: Well, there are some things you have to say by law, aren't there? Christie: Yes, like we need to identify ourselves and state what our level of training is, and verify that we have the right patient, etc. But the thing that was off-putting was


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that he acted like all our patients were going to need the same steps to be followed in the same order. No matter what the situation is, what the problem is, and how the patient is reacting, they just do 1-2-3-4. Mom: It seems very contrived. The doctors at my office sort of have their own style for breaking bad news with their patients, but it isn't always the same words in the same order. Christie: Exactly, I know that if it were me, I would want to be treated as an individual. Otherwise it's just disingenuous. I guess the thing that surprised me the most, though, was when we finally got to talking about being empathic—something of real value—I overheard my classmates mocking the professor. Mom: What did they say? Did the professor hear them? Christie: They said facetiously, "I understand your feelings... I empathize with you." Mom: Did you call them out on it? Christie: No, because the class was still in session. I think they were so bored and so annoyed by the earlier cookie-cutter approach that they didn't take anything of value from the class. With her strong interest in the topic, Christie was particularly delighted one day to find a notice of an upcoming seminar for continuing education credits titled, appropriately enough, "Bad-News Delivery." She signed up and attended the seminar with great enthusiasm. It was conducted by a graduate student working on his doctorate in Health Communication, and he provided a more sophisticated overview of the topic than she had heard so far. He shared with the seminar attendees both empirical research on the topic and a theoretical framework for providing some understanding of the complexities of the process. One of the things he addressed was the whole "recipe" approach to bad-news delivery that Christie had spoken to her mom about in the past, except he referred to it as a script. After the seminar, Christie sought out the presenter, Terry McMillan, to talk with him about the topic in more detail and share with him her experiences. Terry was studying the individual differences among third-year medical students in their abilities to deliver bad news effectively and appropriately to a simulated patient. Although this was a role-play interaction, it was part of the students' clinical performance examination during their internal medicine/surgical clerkship, so the students treated the interaction quite seriously. Terry: Christie, thank you so much for taking an interest in my study. Christie: You're quite welcome. I've been intrigued by bad-news delivery for some time. Terry: Oh yeah. Is that because of your medical training? Christie: Well, yes partially. It really all began when I was back in high school and my older brother Matt was given some bad news in a rather inappropriate manner.... But that is a really long story that I'll save for another time. I'm really interested in hearing more about your study. Terry: Well, it really boils down to being person-centered or in this case patient-centered. Being patient-centered means meeting the instrumental goals of the interaction—delivering the bad news—while still validating the perspective and feelings of the patient. Christie: It seems reasonable to do that. Why do you think that it doesn't happen every time? Terry: Well, from a theoretical perspective, we would explain a physician's inability, or anyone for that matter, to be person-centered to be linked back to the level of their interpersonal cognitive complexity, which is a measure of how large a

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repertoire of skills and experiences a person has regarding interpersonal interactions. Christie: I'm confused. It has been a while since I studied cognitive psychology. Are you talking about IQ? Terry: Actually, Interpersonal Cognitive Complexity is not IQ. The higher a person's Interpersonal Cognitive Complexity, the more person-centered they are capable of being in an interaction. Christie: I see. So you're linking cognitive development with actual behavior? Terry: Yes, and not just verbal behavior but nonverbal behavior as well. Going back to what I was saying earlier about goals, delivering bad news and validating the patient do not have to be mutually exclusive. Most of the students in my study effectively delivered the bad news to the "patient" and most of their discourse was characterized as a script. In particular, in over 10 hours of videotaped interaction, you can hear the medical interview repeated over and over again. Christie: I call the "script" the cookie-cutter approach. The patients are treated like the cookies, no variation. Terry: Your analogy is a good one. My argument is that we are all individuals and wish to be treated as individuals. I gave this presentation at a hospital in the city recently, and I had an attending physician say to me, "Well, I know patients who don't want to be validated. They just want me to bottom line it and be blunt." Christie: What did you say to him? Terry: I told him that technically, if he knew that that is truly how the patient wanted to be told the news then he was being person-centered by adapting to the patient's wishes for how the interaction should go. Christie: What did he say to that? Terry: He just smiled. I think he just disregarded everything I said, which is okay because I think other physicians at the seminar understood my point. Getting back to that cookie-cutter analogy. I call it Cooking Up Communication, and, trust me, all too often I think that we are guilty of handing out recipes instead of teaching people skills that allow them to adapt to the interaction at hand. Christie: So you don't believe in the scripts? Terry: Actually, following a script is not necessarily a bad thing. It isn't a conversational felony to use a script. However, it can impede providers from being appropriate and person-centered if they don't deviate from the script when it's necessary to do so. Christie and Terry continued their conversation for several more hours. Terry was able to steer Christie in the direction of more research that went beyond the many how-to articles she had found to date. Christie found these articles much more grounded and insightful. She was especially interested in work like that of Doug Maynard, who did discourse analytic studies of bad-news delivery. He described bad news as bringing about a rupture in the reality of the receiver and looked at how the communication of this information was foreshadowed. Some of Maynard's earlier work on the subject brought this point into clear view. Christie read that Maynard studied bad-news delivery to parents whose children had been diagnosed with mental disabilities. He found that if physicians start these bad-news delivery interactions by having the parents describe their child's behavior and reiterate their concerns for why they initiated medical treatment and diagnosis, the parents were more likely to accept the news. In other words, it was a way to confirm what the parents suspected and to help them in their process of acceptance. Christie thought of Terry's person-centered approach when she read about these studies.


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FAMILY ISSUES

As Terry and Christie talked more about bad-news delivery, she began to think about differences in bad-news delivery to the patient and bad-news delivery to the patient's family. There were different constraints in the two situations. Terry had told her about a study that traced the history of medical disclosure in this country. He said that it was in the 1950s that a shift occurred where patients began to demand the truth about their conditions. This still left the issue of telling family members. For instance, it's the family who has to be told that a patient has died, and Christie soon came to realize that the family should not be asked for permission to do an autopsy at the same time they are being given the news of the death. It is similar to what Anne always talked about with decoupling the news from asking for organ donation. Also, the family should be warned about how the deceased will look before they see the body.

REACTIONS TO BAD NEWS Christie discovered some pretty consistent reactions to bad news from patients and their families, too, both in her own experiences and in the literature. As she thought and read about it, she found that the reactions tended to fall into one of six categories: acceptance, overwhelming distress, denial, ambivalence, unrealistic expectations, or collusion. She found the ideas of acceptance, distress, and denial pretty straightforward, but had to do some additional reading about the others. Ambivalence, as described in the literature, involves going back and forth from acceptance to denial. Similarly, people with unrealistic expectations appear to understand and accept the bad news, but then request or expect things that are completely inappropriate for their state or that of their family members. Collusion involves a family member, and occurs when either the patient or someone from the family tries to convince the care provider that someone else not be told the bad news. It's all right for a patient to request this, but it's problematic when a family member requests that the patient not be told, as this violates the patient's legal rights. Christie observed denial in the daughter of a terminally ill patient. She spent a long time talking to Cathy about her father's cancer treatment and prognosis. They then talked a bit about coping, and Cathy, who was enrolled in the same doctoral program in Communication as Terry, expressed interest in writing something about her experiences and those of her father. She talked about the language that she heard being used to describe him and his situation, and described an interesting piece of rhetorical analysis that she saw coming out of that. Christie: Yes, I can see it, too. "The Rhetoric of Terminality." Cathy: Yeah, "The Rhetoric of Survival." "Wow," Christie thought, but didn't say. "The rhetoric of 'terminality' vs. the rhetoric of 'survival.' That's a big difference. She still hasn't accepted the fact that he's going to die."

EPILOGUE Terry, whom Christie later married, and all of her family were very proud of the fine doctor she became. Although, like many doctors, she was a very good provider of medical care, they were even more pleased with the interpersonal skills she developed and with her ability to sensitively adapt to individual patients and their families during those times that she had to

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deliver bad news to them. Importantly, Christie felt better about herself as a doctor when she saw patients suffering a bit less because of how she told them bad news that had to be shared. Even her brother George came to appreciate the importance of this issue, as he "came to" after prostate surgery to find that his prostate had been completely removed during surgery, which was not the outcome he had expected. When the doctor bluntly told him this, followed by the news that he would no longer be able to obtain an erection unaided, George realized the difference a little sensitivity from the doctor might have made. "It would have been bad news, anyway," George told Christie, "but I see what you mean now—it would have cushioned the blow a bit if he had told me ahead of time that this might be a possibility and that there are some options available if it does happen. I would have felt better if he had acted like he even cared a little. I felt like I'd been blind-sided!" All that Christie could do was hug her brother—yet another victim of poor bad news delivery. As Christie moved through her career as a doctor, she let the words of authors Rabow and McPhee (1999) ring in her mind every time she delivered bad news: "Clinicians are not responsible for knowing the answers to patients' deeply personal and existential questions; they are called on to be present as witnesses to their patients' suffering and to respect the vulnerability created by the news they bear" (p. 263).

RELEVANT CONCEPTS Bad-news delivery: The verbal and nonverbal communication of medical information that will be perceived by the patient and/or the patient's family as negative. Decoupling: The separation of the delivery of the news that the patient has died from the request for the donation of the patient's organs. Disconfirmation: A verbal and/or nonverbal message that invalidates the perspective or feelings of the other interactant. High-context cultures: Cultures that place a higher emphasis on nonverbal communication and look to the environment (i.e., physical setting, social norms) for cues in interpretation of messages. Interpersonal cognitive complexity: A measure of the social-cognitive development of the individuals in terms of the integration of their psychological construct system. Medical disclosure: The communication of medical information from a care provider to a patient. Person-centeredness: The ability to value and legitimize the perspective and emotions of the other person(s) in the interaction, such that you help them achieve their interactional goals without sacrificing your own.

DISCUSSION QUESTIONS 1. Why is it difficult for care providers to communicate bad news to patients and their families? 2. What are some different constraints that affect the communication of bad news to patients vs. their families? 3. What individual and cultural characteristics are important to adapt to in the process of delivering bad news? 4. How can reassurance be discontinuing? How can it be communicated in a more confirming way? How can bad news be delivered in a disconfirming way? 5. What is person-centeredness? What is its relevance to bad-news delivery?


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REFERENCES/SUGGESTED READINGS Gillotti, C. M., & Applegate, J. L. (2000). Explaining illness as bad news: Individual differences in explaining illness-related information. In B. Whaley (Ed.), Explaining illness: Research, theory, and strategies (pp. 101-122). Mahwah, NJ: Lawrence Erlbaum Associates. Gillotti, C. M. (2003). Medical disclosure and decision-making: Excavating the complexities of physician-patient information exchange. In T. Thompson, A. Dorsey, K. Miller, & R. Parrott (Eds.), Handbook of health communication (pp. 163-181). Mahwah, NJ: Lawrence Erlbaum Associates. Gillotti, C. M., Thompson, T. L., & McNeilis, K. (2002). Communicative competence in the delivery of bad news. Social Science and Medicine, 54, 1011-1023. Hafferty, F. W. (1989). Into the valley: Death and the socialization of medical students. New Haven, CT: Yale University Press. Maynard, D. W. (1989). Notes on the delivery and reception of diagnostic news regarding mental disabilities. In D. T. Helm, W. T. Anders, A. J. Meehan, & A. W. Rawls (Eds.), The interactional order: New directions in the study of social order (pp. 54-67). New York: Irvington. Rabow, M. W., & McPhee, S. J. (1999). Beyond breaking bad news: How to help patients who suffer. Western Journal of Medicine, 171, 260-263.

Additional Resources Web sites: www.hematology.org/meeting/2002/newsdaily/BadNews.cfm www.acponline.org/journals/news/jan03/communication.htm www.uiowa.edu/~ournews/2002/october/1030bad-news.html www.biomed.lib.umn.edu/hmed/990901 _bad.html www.articles911.com/Communication/Delivering_Bad_News Suggested Movies: The Doctor Patch Adams Terms of Endearment Marvin's Room Lorenzo's Oil Forest Gump


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Problematic Discharge From Physical Therapy: Communicating About Uncertainty and Profound Values Austin S. Babrow David O'Connor Dinn Purdue University Charlie muttered an oath. The simple knot in his shoelace was defeating him. He knew the knot was not very tight and could see exactly how to disentangle it. It was just that his right arm felt leaden, his hand a numb claw. Try as he might, and he had been trying to put on his second shoe for a couple of minutes, he was unable to pull apart the knot. On top of the frustration of being unable to accomplish a simple task that he'd mastered 60 years ago, Charlie was vexed by the choice that remained: either ask his wife for help when he'd assured her minutes ago that he needed none, or wear the ridiculous pair of loafers his daughter had bought for him at that ritzy fashion mall in Indianapolis. Growing up on the farm as a child, and then working on it until he was forced to sell just after his 66th birthday 2 years before, he had never owned a pair of these useless shoes. On the farm, he wore sturdy work boots, except when the ground was so rain-sodden that he had to put on a pair of rubber boots. He had always worn a respectable pair of black lace shoes to church. These had been his standard footwear since selling the farm. So Charlie had no use for loafers. Even the name irritated him. Looking up at the clock, Charlie saw that it was nearly time to leave for a physical therapy (PT) appointment. This frustrated him even more; he had wanted to report to Connor Morrison, the young therapist, that he had tied both of his own shoes today.1 It would be embarrassing to admit that a simple knot had defeated him. Still, it was better than wearing loafers. And, he had managed to tie one shoe. With these reassuring thoughts in mind, he called his wife for help. In this, the most difficult time in his life, Charlie kept hearing that it was important to think about small successes. His doctors told him that setting too high a goal would set him up for failure and disappointment. Charlie felt uncomfortable with this advice. He had always considered himself to be a man unafraid of aiming high. Hadn't he bought the neighboring farm when old man Deutsch passed away? Hadn't he been able to keep the new land until the burden of farming it without good help had forced him to sell off the excess acreage? He had taken it in stride when neither his daughters nor their husbands wanted to take over the family farm. Not everyone had the grit to keep farming these days. And many farmers were 27

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not shrewd enough to sell their farms; even though the price he got was pretty low, at least he had not gone completely bust and had the place sold out from under him by the bank. Charlie also disliked the advice to "think small" (as the advice seemed to him) because it meant having to watch his thoughts like a mother hen. It seemed false and unnatural, sort of like he'd be lying to himself. What he honestly wanted was hope. So he also disliked the advice to think small because he thought it implied that things would never return to normal. And he wanted desperately to be his old self. He had lost so much. Although it was true that he had regained his voice and some function in his arm and leg, how much more would return? How long would it take? What could he do to improve his situation? It hurt to think about all of this. Charlie could actually see some value in small successes. They brought a brief rush of hope and distracted him for a time from thinking about how much the stroke had changed him. Still, this didn't mean that he should think small. When little improvements were few and far between, hoping for small gains felt like giving up on a fuller recovery. And all this thoughtmanagement was both unnatural and hard work. So, in addition to the knot in his shoelaces, a mental knot bedeviled Charlie. Still, his condition had improved. In the days immediately after his stroke, Charlie had ridden a nightmarish roller coaster ride. Unsuccessful efforts to speak coherently or move his right arm and leg brought him close to panic. Would he never regain his speech?2 Was he paralyzed on one side for the rest of his life? The doctors' brusque confidence and the nurses' cheerful encouragement calmed him somewhat, but these periods of relief gave way to fear when he saw the worry in the faces of his family members. The roller coaster of panic and relief gradually gave way to new thoughts and emotions in the following weeks. Although he was still afraid from time to time, more often Charlie felt anger, sorrow, frustration, hope, satisfaction, and joy. These feelings seemed to change, depending on his body, his ruminations, and interactions with health care providers, family, and friends. When he regained speech and limited mobility on his right side, Charlie was emboldened. He told himself that he would return soon to the body and life of a vigorous, independent, 68-year-old. However, when he had trouble doing something that seemed simple, such as cutting a piece of food or tucking in his shirt, or when he lost balance maneuvering around the old farmhouse, he'd feel a flash of fear and become angry. Why had this happened to him? Why was his wife always pestering him to do things for himself? Why wouldn't she help more? She had always been so helpful around the farm before he got sick. Why was his house such a cluttered mess? Surely it had not always been this way. Did she need help? Why were his daughters working full time instead of staying home to raise their kids and help out their mother and father? Could Charlie and his wife Meg afford paid help at home? Why weren't his doctors and therapists giving him better care? Why weren't they more understanding and encouraging? Interactions with his family doctor and the hotshot, overpriced neurologist were not always what he wanted them to be like. He expected his doctors to "shoot straight," to tell him what was going on. Although they had been willing to tell him what had happened to his body, the doctors seemed reluctant to talk about his prognosis. He wanted them to be clearer about what to expect in terms of his recovery. When would he be able to do more things for himself? When would he be able to drive? Why were his arm and leg recovering so slowly? When would his sense of balance return to normal? When he asked about these things, his doctors seemed evasive; they became downright slippery when he tried to pin them down. A couple of times, the doctors had told him that he might not recover much at all. That really got him mad. He had known folks who had never recovered from devastating strokes, but they were older and really sick. By contrast, Ned Miller, a farmer out in the western end of the county who had a stroke a few years back, eventually got

3. PROBLEMATIC DISCHARGE FROM PHYSICAL THERAPY

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back to farming as if nothing had ever happened to him. When Charlie insisted that his stroke was no worse than Ned's, his family doc seemed to back off and admit that he might eventually regain much more use of his arm and leg, although "that worthless neurologist" said that no two strokes were the same. Still, both docs told him that it was important to remain hopeful. So, why did they disagree about his prospects? Generally, why weren't they more encouraging and optimistic? Why weren't his doctors willing to shoot straight about his prognosis? Were they hiding something from him? Were they treating him like a child just because he was old and had been sick? Were they competent? His family doc was nearly as old as himself, so maybe he didn't know all the latest treatments. And Charlie had heard from a few of his cronies at the Downtowner restaurant that the docs at the county hospital were not that great. Did all the really good docs work at one of the big-city hospitals in Indianapolis? Some of the guys at the Downtowner thought there were excellent docs right in town. Who was right? If he drove up to Indy, would he receive better care? Interactions with his family were only somewhat more helpful. Charlie was happiest talking with his daughters, Sarah and Grace, because they were so optimistic compared with his doctors and his wife. However, even conversations with his daughters at times made the situation harder to bear. Both talked like Charlie's condition was improving rapidly and substantially, and encouraged him to believe he would soon be back to his old self. They also brought him printouts of articles from the Internet. At first, he found this useful, but he soon became overloaded by all the information. It was just more than he could manage, so he stopped reading the printouts. Although Charlie wanted very much to hear his daughters' encouragement, these conversations had come to upset him. He knew Sarah and Grace loved him, but they were unwilling to hear about what a hard time he was having, how much he needed help from their mom, and how tough he was finding the PT with Connor. Why did they brush off his concerns? Why did they insist that everything was going so well and keep pushing those Internet clippings on him? And why did there seem to be so much anxiety behind their smiles and encouraging words? Were they hiding something from him? Were they really feeling pessimistic but afraid to admit it? Meg, Charlie's wife of more than 40 years, was mostly the blessing she had always been, but she had also started to become a source of frustration. She was her old cheerful self, full of energy and generosity when he returned from the hospital, and she continued to be a great help to him months later. However, she had also become more irritable than she had been before the stroke, and she had even become somewhat less accepting of his limits. At times, she seemed downright angry with Charlie for not trying harder to get around or do things for himself. She was especially unforgiving when it came to his diet and therapy exercises. Did she expect him to eat that bland pap the dietician had prescribed for the rest of his life? To eat without any salt whatsoever? To become a vegetarian? To exercise from sun-up to sundown? Meg was indeed trying to be cheerful and upbeat, but she was worried. She had grown tired in the months since Charlie came home from the nursing home. As a healthy 63-year-old farm wife, she was able to manage Charlie's needs for physical help. Still, his needs were quite demanding. Would they remain so forever, or would they decrease significantly? And if he were to improve much, when would this progress happen? How much would he be able to do for himself? How much would she have to do? These and many other questions came to mind whenever she thought about his very slow and limited recovery to date. As time passed, Meg found herself no less willing to help Charlie, but she was beginning to feel resentful. She became frustrated with him at times. Rather than appreciating her efforts to learn a new way to cook, he grumbled. He always asked to be dropped off so he could have a cup of coffee at the Downtowner when she went to town on errands. She suspected

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that he cheated on his diet when out of her sight. It also bothered Meg when Charlie did not complete the exercises Connor had assigned in PT. Were they too hard, as Charlie said? Could he not try harder? Had the stroke affected his personality in some way, perhaps damaging his pride or self-confidence, perhaps making him take advantage of his situation, doing less and demanding more? As these thoughts crossed her mind, Meg found herself in a swirl of anger, sorrow, anxiety, and guilt. Making matters worse, Meg wanted very much to talk about these uncertainties and worries, but she found few satisfying opportunities to do so. How could she talk to Charlie about her thoughts and feelings? Would he understand and respond well, or would he be hurt? Would he feel that she distrusted him? That she thought he was irresponsible? That she was disappointed in him? She also hated that, despite her best efforts to be supportive, she leaked her frustration and worry. Talking about her feelings with Sarah and Grace was impossible. Meg could see that they needed to think of their father as the vigorous and self-assured man he had been before the stroke. They were guided more by their hearts than their heads and seemed incapable of accepting the possibility that their father had been changed forever. Meg hoped her daughters would soon come to see and begin to accept the changes, but she was afraid to confront the girls by telling them how little their father had regained since his speech had returned. Even though she could see the situation more clearly than her daughters, and perhaps more clearly than the doctors or physical therapist, Meg was unwilling to express out loud to anyone just how frightened she was that Charlie would recover little more. Would giving voice to her innermost worries somehow make them come true? Would she cross an invisible line and anger God by expressing such faithlessness? Indeed, she was not even sure what to hope for. What should she ask of God? Talking to her minister and friends was a mixed blessing. One friend simply dismissed any expression of uncertainty; all would be well, she insisted. Another friend encouraged her to look into getting a visiting nurse or housekeeper. Still another friend encouraged her and Charlie to move in with her oldest daughter. Were things that bleak? Everyone, friends and minister alike, assured her that God would help her family in its hour of need. But what did this mean? What was she to pray for? At the end of the day, when she lay in bed next to her frail husband, exhausted and beset by worry, she wanted to ask God to return Charlie to his old self. At the same time, she knew better than anyone, except God, how much Charlie had lost and therefore how much it was to ask for Him to return Charlie to his healthy pre-stroke self. In sum, as Charlie's main care provider, Meg saw clearly that she needed to understand just where things stood. She also intuited the vital importance of hopefulness—for her husband, herself, and their children. Her minister reminded her of a prayer that had given her comfort in the past when confronted by smaller trials: "God give me the strength to change those things I can, the serenity to accept those things that I cannot change, and the wisdom to know the difference." Unfortunately, since Charlie's stroke, although she prayed for strength, serenity, and wisdom, she was confronted daily by her limits. So she ended each day simply asking for God's mercy, whatever it might be in His infinite wisdom and compassion. She took what solace she could from this vague, open-ended entreaty. In short, Charlie, Meg, and the girls were trying to keep an optimistic outlook, but it was getting tougher to do so. Charlie was improving so slowly that at times it was hard to see change. Moreover, he was getting little definitive information about his prognosis from doctors that he saw less and less frequently as time passed. Even though he had found them mostly frustrating this last month, Charlie believed that the weekly PT sessions were his best hope for information and help at this point. So, it was with mixed feelings that Charlie sat by Meg as she drove him to yet another PT session.


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Charlie liked his therapist and the friends he had made at the PT clinic, and it was a pleasure to see them most days. Still, therapy itself was no great pleasure. It was a lot of hard work, and lately there had been little reward. After a lifetime in the fields, Charlie had adapted rather well to the easy life he had found in the first two years of his retirement. So, each week he told himself to have a positive attitude and to try hard to do what Connor asked. He thought he did pretty well, too, even if the boy sometimes asked him to do what seemed impossible. At times, he was even happy to try because Connor was so encouraging. However, lately, the therapy sessions had been getting more frustrating, and Charlie could tell that he was not alone in this feeling. When he thought that Connor was frustrated with him, Charlie would get mad, although he would never show it. Why did the young "whipper-snapper" give him exercises he could not do? Why did the home exercise assignments take so long? Did he think Charlie would spend his entire life doing nothing but working his afflicted arm and leg? Was there no more efficient therapy available? Was this youngster, who barely had a beard to shave, really an expert at PT? Was he as good as the therapists in the city? These troublesome thoughts dogged Charlie whenever he felt frustrated, and particularly when he sensed frustration in Connor's manner. The thoughts and unpleasant feelings would linger until Charlie had one of those small successes that everyone told him to aim for. He would then feel hope return, and he would congratulate himself and whoever else was around. But when there were so few successes, there was little to say. Lately, conversations with Connor also had become less satisfying. Charlie wanted to reveal his worries, but he felt uncomfortable talking with a stranger, especially a "kid," about his feelings. He was also unwilling to tell Connor how hard it was to do the strengthening and flexibility exercises at home. He felt embarrassed about admitting that he was not sure he was doing them right, even though they had been going over his home program for many weeks. How would Connor react if Charlie suggested that there might be better exercises? That better PT might be available in Indianapolis? He did not want to hurt Connor's feelings. He liked the young man. So when the sessions turned frustrating, Charlie generally tried to get Connor to tell him what to expect in the coming weeks. This dialogue was unsatisfying because Connor was never definite about the timetable for recovery. Instead of talking directly about his client's prognosis, Connor encouraged Charlie to work harder than ever to get over the "plateau" in his recovery. Maybe today would be different. Perhaps Connor would give him new exercises. Maybe today Charlie would show everyone, including himself, that he had gained more than they thought. After all, he had tied a shoelace for the first time today!

THE PHYSICAL THERAPIST Despite the constant demands of his very busy practice, Connor Morrison found himself thinking of the coming afternoon appointment with Charlie whenever he was involved in a routine task. He knew it was important to give each patient undivided attention, and he had a steady, uninterrupted stream of patients these days, but Charlie's case was troubling. It intruded again and again into his thoughts. As a licensed physical therapist in practice since earning his master's degree 3 years earlier, Connor felt comfortable dealing with involved neurological cases. He knew that he was quite competent; clients, coworkers, and supervisors often attested to this fact. However, Connor was uncomfortable with some important and recurring communication situations. Today, he was facing just such a challenge. Connor had started his work with Charlie Van Sleet under fairly typical circumstances. Several months ago, and shortly after his 68th birthday, Charlie suffered a left-sided cerebral vascular accident with consequent right-sided hemiparesis, a stroke that left him partially

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paralyzed on his right side. Connor had taken the outpatient case a short time after the elderly man's discharge from the hospital. Although Charlie presented with some important physical limitations, his stroke appeared to have had little impact on his cognitive abilities. He was generally able to follow one- and two-step commands; was oriented to time, person, and place; and had good safety awareness. He did have some difficulty with solving problems in new or complex situations,3 but his major limitations were in the area of functional mobility. In his first weeks back at home, Charlie had considerable difficulty with transferring (i.e., moving from one position to another, such as moving from a seated position in a chair to a standing posture), balance, and ambulation. These limits severely restricted his independence, a loss that is common for the growing number of older individuals who suffer strokes. Indeed, Charlie was completely reliant on Meg for instrumental activities of daily living when he was first released from the hospital. After nearly 4 months of therapy, Charlie was now able to get around the first floor of his home using a quad-cane, or "walker." He also could sit and get up from chairs with reasonably high seats, but he still needed his wife's help with transfers to his favorite lounge chair or to the commode and getting up and down the stairs on their front porch. (Charlie's family had apparently rearranged his home so that his bedroom was now on the first floor.) Although these improvements seemed to bring Charlie some happiness, Connor could tell that Charlie was having trouble adjusting to the remaining limitations. Indeed, since they started working together, Charlie seemed to want to improve physical function faster and more substantially than it was reasonable to expect. Connor had tried to encourage him to be realistic, but his words seemed to have had little impact on his client's expectations. Connor was also troubled by Charlie's apparent unwillingness to admit that he had not been making much progress for the last several weeks. In fact, by the standards of care dictated by Medicare, Charlie's therapy might have been discontinued a few weeks earlier; he had hit a plateau between weeks 7 through 11, and Connor had very seriously considered calling an end to therapy. The Medicare rales were pretty clear on this: if, in Connor's clinical judgment, his client would make no further significant progress with skilled therapy, Medicare would no longer pay for PT. At that time, it would be up to the client to pay in full for the costs of regular visits or to discontinue PT and shift instead to self-care. Few elderly stroke patients in Connor's practice had been able to pay for therapy by themselves. Most typically had debts from the stroke as well as other expenses from chronic illnesses, and many, including Charlie, had essentially no coverage outside of that provided by the Medicare program. At the time of his first plateau in improvement, Charlie seemed both unaware of the stall in his progress and not yet adjusted emotionally to his limitations. Connor had continued skilled PT, writing up progress reports that, if not strictly a reflection of his innermost thoughts, were not outright distortions of Charlie's prognosis. In this way, Connor had been able to ensure continued Medicare reimbursement, and PT had continued. Fortunately, if somewhat unexpectedly, Charlie had actually improved a bit more during weeks 12 through 14, but he had now passed another 4 weeks at a plateau. In spite of this, Charlie continued to hope for more changes in his physical functioning, and he pressed Connor for an optimistic prognosis. But Connor knew that, following Medicare treatment and compensation guidelines, he could not justify continuing Charlie's plan of care for another 30 days. His treatment would no longer be covered. Although it was time for his discharge, Connor dreaded the interaction that lay ahead. It was unusual for Connor to greet Charlie in the reception area when the generally affable old man arrived, but Connor finished quickly with his 1 o'clock appointment and waited anxiously as he watched Charlie move slowly through the door held open by his wife. Charlie was surprised to see the young man waiting and gave him a big smile. Connor knew that Charlie was looking forward to talking with him. He knew Charlie had been feeling


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housebound since the stroke and enjoyed the sessions with his physical therapist. He also felt that Charlie admired him for his expertise and dedication. For his part, Connor liked Charlie, although his client was also frustrating. The old man was affable and cooperative in the clinic; he generally tried hard to do the exercises while Connor supervised in the clinic, although he was at times more balky than Connor wished. Connor also suspected that Charlie was not always responsible when it came to the home exercise assignments he had been given. It wasn't that Charlie seemed unwilling to work. Rather, it seemed like he wanted to improve faster and more substantially than it was reasonable to expect, and he also didn't seem to understand just how hard it would be to recover much more than he had already.

THE INTERACTION After Connor's initial greeting, Charlie managed a partial smile but strained a bit to give a genuine handshake with his affected right hand. He noticed that Connor was more restrained than usual, but he was too preoccupied with thoughts about the difficult communication task that lay ahead: getting Connor to tell him clearly when he'd start to improve again or give him better exercises. Connor followed Charlie's slow, quad-cane-assisted walk from the waiting room to the rehab area. The area was a large open room with various forms of equipment, including treadmills, stationary bicycles, and parallel bars. It was bordered on two sides by a few smaller examination cubicles with curtains for privacy (along the side facing the rehab area). On this day, all of the semiprivate curtained examining cubicles were taken, so Connor asked Charlie to sit on a folding chair by a table in the open rehab room. The therapist observed his client's difficulty seating himself in the chair, but Charlie felt good about the fact that he was able to sit without help. Feeling smug, Charlie turned to his therapist and asked his standard opening question, "So how are you going to torture me today, Doc?" Connor and Charlie both smiled and laughed, but Connor felt the knot in his stomach tighten at the thought of what lay ahead. Reluctant to jump right into the discharge, Connor asked his client to stand so that they could work on his balance. Connor positioned himself by Charlie's side as he had him stand on a balance pad that they had been using the last several weeks to improve his ability to maintain his balance, especially while ambulating over uneven surfaces. Before long, Charlie asked to move on to something more difficult. Connor asked him to close his eyes while his feet were together. When he did, it was soon apparent that Charlie had made no gains during the past week, so before Charlie was done trying to stand with eyes closed, Connor said, "Alright, Charlie. You can stop now. That's enough for today. Why don't you sit down so we can talk about some important issues?" Charlie smiled as he sat, thinking that the therapist stopped him because he had done well. He hoped to press this good news by insisting on a clearer and more hopeful prognosis. Why, he might even insist on new, more efficient exercises instead of hinting about it as he had in the past. "I oughta give that neurologist a call and let him know how wrong he was to tell me I'd never come all the way back. Maybe I've got some ways to go, but he sure didn't think I'd come this far. So what's next, Doc?" Still reluctant to jump into the unpleasantness, Connor said, "Well, Charlie, we'll get to that in a sec, but let's first review how often and how long you've been exercising each day at home this last week." "You know, Doc, I do as much as I can, near every day. Them exercises are hard, but I stick with 'em. Near ever' day. So what's next? Anything new?" Charlie thought with some anxiety

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about what Connor would say if he knew how much trouble Charlie had with the exercises and how often he skipped them. If only Charlie could get something new to try, something more efficient. Hearing Charlie evading his question again, Connor considered pressing for more information, but he did not know where to begin. Charlie just seemed unwilling to take more responsibility for his PT. It was time to prepare his client for the bad news (what his PT professors had called "firing the warning shot"). "We have to talk now about something that you might not like," Connor said. "What's that? Do you want me to do even more of them same old exercises?" Seeing the frustration in the elderly man's eyes and hearing it in his voice, Connor asked, "Do you want to get better, Charlie?" "Of course I do! Why would you ask that?" Charlie snapped. Unnerved by his client's indignation, Connor felt himself become defensive, and his aim to move to the bad news was momentarily forgotten. "Well then, why aren't you pulling your weight at home?" "I'm pullin'. I'm pullin'. It's just these exercises ain't right," Charlie blurted out in his anger. The conversation was not going like he had expected. What was Connor trying to accuse him of? What could he say to learn what he wanted to know? What did he want to know? His thoughts were blurred by anxiety. For Connor, too, the interaction had gone off on a very unfortunate tangent. He had meant well. Indeed, he hated to offend the frail but usually genial old man and was doing his best to avoid that end. Moreover, the termination of therapy felt a bit like a failure despite his best efforts to see Charlie's stall in progress as something that just happens sometimes. So, not knowing what else to do, Connor decided it was time to tell Charlie that their work together was at an end. "Well, I sure wish you could have gotten more out of them, Charlie. The problem is, you've reached a plateau in your function, and this has to be our last meeting." Charlie sat in stunned silence. After an uncomfortably long interval, Connor went on, thinking that perhaps Charlie was feeling offended or sad. "It's nothing personal. Medicare requires that we make consistent functional progress, but for the last several weeks, I haven't seen any improvement in your status." "I'd be willing to work harder at home," said Charlie. "If it were up to me, I'd continue with you indefinitely, Charlie. It's just that 600-pound gorilla, Medicare. They just won't pay for visits unless there is progress to report," Connor stated. "Ain't I been progressing?" "Well yes, but not lately." "What's that mean?" "As I said, it means that we have to terminate therapy sessions." "So I ain't gonna get any better'n this? I gotta live like this forever?" "Charlie, it's hard to say just what might happen in 3 or 6 months' time, what'11 happen in a year. I'll give you some exercises to work on yourself. If you do them, there's no telling what you'll accomplish." "You mean you'll give me new exercises, but you won't see me no more?" Charlie replied. "What ' ll I tell Meg and the kids?" "Oh, you can keep in touch with me, give a call now and again. I'd like to hear how you're doing. And of course we can continue therapy if your physicians order it and you can afford to pay for it out of your own pocket." "Is this decision final? I can't afford to pay you without Medicare. Could I get coverage to start therapy with another doc?"


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"No, Charlie. Medicare will know that your PT sessions have run their course. Let's talk some about what you can do at home from now on, and then I'll walk you up front and say goodbye to Meg." And just like that, with Charlie's questions hanging in the air, and many more questions in mind, Charlie and Connor brought their therapeutic relationship to an end.

IMPROVING HEALTH COMMUNICATION BY UNDERSTANDING UNCERTAINTY Many uncertainties characterize illness. Communication about illness is often about these uncertainties. A fundamental premise in a growing body of health communication literature is that competent communication requires a clear understanding of the uncertainties patients, care providers, and families might be experiencing. One of us (A.B.) has developed a framework called Problematic Integration Theory, which we believe to be useful for developing this sort of sensitivity or awareness. It involves several important distinctions and their implications. A simple but useful way to distinguish and identify illness-related uncertainties is to notice that illness makes us uncertain about lots of different issues. Think, for example, about Charlie. Obviously, he is uncertain about (a) how much his arm and leg will improve, and (b) when to expect these improvements. What are Charlie's other uncertainties in relation to his present physical condition, prognosis, and treatment; his personal identity; his relationships with Meg, their daughters, his doctors, and Connor; and family finances? Answering these questions identifies the content of Charlie's uncertainties. Effective health communication depends in part on sensitivity to the range of this content, the many issues about which participants may be uncertain. For example, Connor's efforts to terminate therapy well (that is, effectively and in a socially appropriate manner) depend on the extent to which he accurately understands the specific contents of Charlie's uncertainty. Another, more subtle, but equally important way to distinguish uncertainties, aside from their different content, is in terms of their forms. What we mean by this is that a person can experience various senses of uncertainty for any single specific issue or content. Indeed, uncertainty takes many different forms. For example, it can reflect perceived (personal or universal) ignorance, ambiguous information, concerns about the reliability or validity of available information (e.g., the process that produced it or the sources that relayed it), a superabundance of information ("overload"), or the realization that something we wish to predict is essentially a random outcome. Again, we can experience these many forms of uncertainty in relation to any particular content. For example, Charlie is clearly uncertain about when his "arm and leg will be back to normal." He might experience uncertainty about this because he feels his doctors are withholding information (only he is ignorant), because nobody knows this information (universal ignorance), because he has been given ambiguous information, because various sources of this information are inconsistent, because the sources are incompetent or otherwise untrustworthy, and so on. The important point here is that, for Connor to terminate therapy competently, he must understand not only the content of Charlie's uncertainties, but also the form (or forms) of each important uncertainty. For example, if he recognizes that Charlie wants to know when his body will return to "normal," he needs to ascertain just why he is uncertain about this issue. In what sense(s) is he uncertain about this issue? A third distinction essential to effective health communication is among the many ways of living with and communicating about uncertainty. We can see this in part by rephrasing the point of the previous paragraph; effective communication requires varied types of messages, or messages adapted to fit specific forms (as well as contents) of uncertainty that concern the

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patient (or care providers, family members, and friends). If, for example, Charlie is uncertain about whether he is getting the right sort of therapy, Connor must ascertain whether his client has received inconsistent messages about his treatment, whether the messages were ambiguous, whether he is suspicious of Connor's competence, etc. There is no simple way to know which is the case. Effective health communication requires not merely good technical interviewing and listening skills; it also requires knowledge of the forms of uncertainty so that questioning and listening can be focused in the most profitable directions. In other words, the competent health communicator must listen for and explore the form of expressed uncertainties (e.g., probe when Charlie asks, "So what's next? Anything new?" or "Do you want me to do even more of them same old exercises?"). We said previously that one way to differentiate approaches to communicating about uncertainty is to recognize that messages must be adapted to the form of uncertainty that is challenging the intended message receiver. There is another way to distinguish among different approaches to communicating about and experiencing uncertainty. To understand this, we introduce one other distinction that is essential to effective health communication: the difference between uncertainty and evaluation. What we mean here is that uncertainties are only worth noting and grappling with communicatively when they involve issues that are judged to be very valuable (either positively or negatively) by those involved in the interaction. Indeed, uncertainties become both more crucial and more difficult to deal with as they relate to more positive or negative issues or events. For example, it is more important and difficult to talk about a life-threatening illness than about an unpleasant but not particularly dangerous one. As another example, for most people, it is probably more important and more difficult to talk about the prospects for regaining full use of one's body after stroke-induced paralysis than about having to live with the typical dietary restrictions prescribed for stroke survivors. Although this may seem obvious, its implications are sometimes unnoticed by people who are ill and their care providers. It is important to know that people generally have a tendency to be somewhat optimistic about their own health and happiness. Although this optimistic bias appears to be the norm, there are wide variations in personal styles, ranging from the "cock-eyed optimist" to the prophet of "doom-and-gloom." Another important implication of the distinction between uncertainty and evaluation is that, although distinct, they are interrelated. For example, desires shape expectations about the future. Think not only of the habitual optimists and pessimists noted above, but also of the effect of desire on our motivation and actual achievement. That is, our desire and motivation can prompt action that itself shapes our chances of achieving our dreams. Similarly, expectation or uncertainty shapes desires, for example, either sustaining or killing hope. In addition, any given uncertainty and evaluation are interwoven within surrounding complexes of related beliefs, opinions, values, and intentions. For this reason, when we address a particular uncertainty in our talk or actions, we often uncover other uncertainties. For example, new information may reduce our ignorance (uncertainty) about one issue and in turn give rise to a cascading sequence of new uncertainties. As a more concrete example, Charlie might ask Meg why she is pestering him, and her answer might reduce his uncertainty about her motives (e.g., she reveals that she thinks he hasn't tried hard enough to get better), but he may then experience various new uncertainties (e.g., is she right? How much harder could he try? Has she lost some respect for him? Has she said this to their children or friends?). Recognizing these implications of the distinction between uncertainties and values is crucial to health communication. The implications reveal that, although we should generally expect optimism, this response will not be universal. They reveal that effective health communication will often require us to grapple with more than a single isolated uncertainty. They reveal that, when we try to deal with any single or very closely interrelated uncertainty, we should be


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attentive to the many ripples of uncertainty in surrounding beliefs about the person's condition, identity, relationships with others, and so on. There is a good chance that, even as we speak in a single turn at talk about a very specific form of uncertainty raised in another person's previous turn, that other person's thoughts will have turned to another issue or form of uncertainty before our turn is through. A fifth and final distinction that is essential to health communication has to do with how we think about ways of living with uncertainty. For many years, and for many good reasons, communication researchers believed that uncertainty itself is bad and that it is best managed by its reduction or complete eradication. Many scholars have come to realize that uncertainty also can be good (e.g., Rintamaki & Brashers, Chapter 12, this volume), in that it can sustain hope when prospects for recovery from an illness are quite bleak. Hence, sometimes it is good to seek or to maintain existing uncertainty. Together, these ideas constitute the idea that uncertainty must be "managed." Yet another way to think about uncertainty is to conceive of it simply as a natural, and perhaps the most fundamental, truth in life. In this view, we surrender the illusion of being able to manage uncertainty and seek simply to live with it. At times, we may be able to reduce or otherwise manage uncertainty (i.e., willfully shape it in adaptive or comforting ways). At others times, we are simply powerless to shape uncertainty and must learn to live with it. Most notably, we can seek to free ourselves from compulsive attachments, such as yearning to be in control. This sort of thinking is characteristic of some interpretations of western religions (i.e., trusting completely in a higher power) and eastern cultures and religions (i.e., accepting uncertainty as the essence of existence, see Levine, 2000). It is, however, uncommon in the United States. We believe that it represents a powerful alternative, another path for living with uncertainty. In short, we offer this last set of distinctions to further enrich the health communication resources of patients and care providers, of the ill and the well.

RELEVANT CONCEPTS Adapting the message to forms of uncertainty: One must know the specific form of uncertainty another person is experiencing to formulate an appropriate message (e.g., give more information if the person lacks it, or provide strategies for coping with too much information if that is the problem). Content of uncertainty: The specific issue or issues about which a person might be uncertain (e.g., diagnosis, prognosis, treatment, cause of illness, costs of treatment, and so on). Distinguishing uncertainty from evaluation: Recognizing that uncertainty and evaluation are two different, though interdependent, issues. To communicate effectively, we must determine if a person is uncertain or uncertain about a given issue as well as whether they appraise that issue and attendant uncertainty (if there is any) as something good or bad. Forms of uncertainty: The ways that we may be uncertain about any specific issue (e.g., seeing something as fundamentally unpredictable; having too much, too little, or contradictory information; suspecting that the information is irrelevant to one's case, unreliable, or invalid). Interdependence of uncertainty and evaluation: Uncertainty can make some issues seem better or worse than they might otherwise have seemed. In addition, our likes and dislikes can influence what we believe to be so (e.g., making us more or less hopeful, rationalizing the way things are, etc.). Living with uncertainty: Accepting limits on our control of uncertainty. Managing uncertainty: Being in control of uncertainty in some fashion.

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DISCUSSION QUESTIONS 1. What were Charlie's uncertainties when he went into therapy on the final day? (You might also think about what other uncertainties he had been experiencing. Also, what were Meg's uncertainties?) What did Charlie do to communicate these uncertainties? 2. What were Connor's uncertainties going into the FT session? What did Connor do to ascertain what was troubling Charlie, particularly to learn what his uncertainties were and what he wanted? 3. What would have been some communicative strategies for dealing effectively with Charlie's uncertainties? From the uncertainty reduction standpoint? From the uncertainty management standpoint? From the perspective that uncertainty is the inescapable and fundamentally unmanageable truth of human experience? 4. What issues or forms of uncertainty were Charlie and Meg concerned about? In relation to Charlie's condition, their future together, and communication about these concerns? ENDNOTES 1 Generally speaking, occupational therapists (OT) are responsible for helping an individual restore upper limb function (among other things). For clarity of the exposition, we have collapsed this important distinction between physical and occupational therapy. 2 Charlie would have seen a speech therapist for difficulties related to speech and some cognitive deficits, such as difficulty problem solving (see below). 3 As noted previously, these sorts of cognitive issues would likely be dealt with in speech therapy rather than PT, although Connor would have been aware of them and the uncertainties they introduce into PT.

REFERENCES/SUGGESTED READINGS Babrow, A. S. (1992). Communication and problematic integration: Understanding diverging probability and value, ambiguity, ambivalence, and impossibility. Communication Theory, 2, 95-130. Babrow, A. S. (in press). Problematic integration theory. In B. B. Whaley & W. Samter (Eds.), Explaining communication: Contemporary theories and exemplars. Hillsdale, NJ: Lawrence Erlbaum Associates. Babrow, A. S., Mines, S. C., & Kasch, C. R. (2000). Illness and uncertainty: Problematic integration and strategies for communicating about medical uncertainty and ambiguity. In B. Whaley (Ed.), Explaining illness: Messages, strategies and contexts (pp. 41-67). Hillsdale, NJ: Lawrence Erlbaum Associates. Babrow, A. S., Kasch, C. R., & Ford, L. A. (1998). The many meanings of "uncertainty" in illness: Toward a systematic accounting. Health Communication, 10, 1-24. Ford, L. A., Babrow, A. S., & Stohl, C. (1996). Social support messages and the management of uncertainty in the experience of breast cancer: An application of problematic integration theory. Communication Monographs, 63, 189-207. Levine, M. (2000). The positive psychology of Buddhism and Yoga: Paths to a mature happiness. Hillsdale, NJ: Lawrence Erlbaum Associates.

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"I Want You to Put Me in the Grave With All My Limbs": The Meaning of Active Health Participation Barbara F. Sharf Texas A&M University

Paul Haidet Baylor College of Medicine and Houston Center for Quality of Care and Utilization Studies Tony L. Kroll Texas A&M University and Houston Center for Quality of Care and Utilization Studies ... we'll work back and forth. I still come in, I still ask questions. He still gives me information that he thinks is useful for me and that will help me. But right now, he does have more control of it because he has to prod me and he has to give me the stronger medications, because I don't have control on the other end.

These are the words of Joanne, a 34-year-old woman with diabetes, during a research interview in which she talks about her struggle to feel "in control" of managing her illness. The "he" referred to is her endocrinologist, Dr. Winner. Though she has seen several physicians for various health problems, Joanne has chosen him as her primary doctor, the one she turns to regularly to discuss health issues, the one in whom she has the most confidence and trust. Like many contemporary patients, especially those with chronic conditions like diabetes that require a reorientation of lifestyle, Joanne is striving to be an active participant in her own health care. Unlike health professionals, who receive training in communication skills, there is no formal education and few informal guidelines for "activating" patients. For each person, being an active health care participant may mean something different. Furthermore, this meaning may transition and evolve over time, as an individual gains experience, the conditions of illness change, and social expectations of the patient-physician relation undergo modifications. As Joanne tells the interviewer the story of her diabetes, she expresses her efforts—and sometimes tensions—in striking a balance between accepting advice and guidance from Dr. Winner

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while aspiring to have more control. She concurs with the interviewer that, in the future, she'd like Dr. Winner to be "more of a consultant than a controller." The purpose of this chapter is to examine Joanne's case to better understand how a patient makes sense of the idea of being and becoming an active health care participant. In the process, we examine two important related concepts. Several scholars in health communication have promoted the notion of partnerships between patients and doctors. What constitutes such a partnership and how does this working interaction relate to the meaning of active patient participation? Second, our investigation is based on Joanne's narration of her health-related experiences, including how she views diabetes as part of a larger family saga. We seek to illuminate the connection between the creation (or in Joanne's case, the re-creation) of a health narrative and the meaning of active participation in health care. Before delving further into Joanne's story, we provide a brief overview of the scholarship concerning the ways in which patients play a crucial and unique part in affecting the process of the medical consultation and subsequent health outcomes. After presenting this background material, we resume Joanne's story. Because this case revolves around Joanne's telling her tale of living with diabetes in her own words, throughout the chapter, we give particular emphasis to the concept of narrative and its importance in shaping how patients respond to both the experience of serious illness and the quality of the patient-physician relationship.1

SETTING THE STAGE: ACTIVE PARTICIPATION IN HEALTH CARE When the doctor tells my family something, they accept it for gold. It's as good as gold. You know, there's no questioning it. / will question it.

To begin thinking about what it means to participate actively while communicating with a physician, you might want to reflect on the last interaction you had with a doctor or other health provider. Did you feel free to talk about anything that was on your mind? Were you free to talk about your condition or concerns in the way you wanted? Who spoke first, you or your physician? Who spoke more often during the conversation? Had you planned in advance what should be discussed or did you write specific questions that you wanted answered during the visit? If so, was that plan followed and were those questions answered? Did both you and your physician ask questions? Did you feel that the doctor really listened to what you had to say? When you left, were there issues you had hoped to discuss that never were voiced? As you mentally respond to these questions, consider also who or what has influenced your notion of how a patient is "supposed" to behave. The tradition of medical paternalism has existed for centuries across many cultures. It emphasizes the dominant role of the physician in providing authoritative advice. From a communication perspective, physicians have tended to be socialized into a "high control" style of interaction in which they talk a greater amount of time, ask more questions, give more directives, and interrupt more frequently than do patients (Waitzkin, 1984). Correspondingly, within this model, patients assume a reactive role in which they voice their health complaints and comply with medical recommendations. However, the past 25 years of scholarship in patient-physician communication in the United States reflects an alternate representation of how patients and physicians may interact, differentiated by elements of more active patient participation. The movement toward patient activation has had an impact on changing the way that physicians are educated, with a shift toward "patient-centered medicine" (Stewart et al., 1995). Several conceptual models have envisioned what the role of a more active patient might be. Physician Timothy Quill (1983) was the first to introduce the notion of the doctor-patient

4. MEANING OF ACTIVE HEALTH PARTICIPATION

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relationship as a partnership, which he described as a contract developed through interaction in which both parties consent to the relationship, have unique responsibilities, are willing to negotiate, and benefit through the interchange. The importance of mutually exchanged information has been recognized as an essential component of health care partnerships. Patients' expertise regarding their own personal capabilities, constraints, resources, and values, as well as self-knowledge of their own bodies and emotions, can be seen as an essential counterpart to health professionals' clinical judgment. Both forms of knowledge—the physician's expertise with medical science and the patient's expertise with the subjective experience of health problems—need to be combined through interpersonal communication to effectively reach a diagnosis and to develop a plan of care (Sharf, 1984). Other ways of examining the patient-physician relationship emphasize the concepts of power and control. Whereas medical paternalism accords power to the physician, the marketbased model of health care consumerism and the ethical model of patient autonomy position the patient as the more powerful, and possibly sole, decision-making agent. Public health researcher Debra Roter and her colleagues (Roter & Hall, 1993; Roter & McNeilis, 2003) have developed a four-point matrix that plots a comparative level of control, high and low, in the context of physician-patient interaction. As a dynamic interpersonal exchange, the behaviors and activities of either participant have the potential to change the nature of the relationship. The matrix describes different types of physician-patient relationships (three of which have been mentioned previously): default, in which there is low control for both patient and physician; consumerism, in which the patient exhibits high control and the physician low control; paternalism, in which the physician exhibits high control and the patient low control; and, mutuality, in which power is balanced between the patient and physician so that goals, agendas, and decisions related to patient care are negotiated. Mutuality, then, is another way of describing partnership. Focusing on communicative behaviors, health communication scholar Richard L. Street, Jr. (2001) identified four verbal features of active patient participation during medical consultations. These include asking questions to obtain and clarify information; expressing concerns such as worry, fear, or anger; being assertive in stating opinions and preferences, making suggestions, disagreeing with the clinician, and interrupting to be able to speak; and sharing one's health narrative, which will be explained in detail as we present Joanne's case. Numerous studies provide evidence of the beneficial outcomes of patient activity. Several investigations have documented that simply coaching patients to ask questions of their health providers can result in increased satisfaction and adherence by the patient to providers' recommendations. A major breakthrough came with studies (e.g., Greenfield, Kaplan & Ware, 1985) that demonstrated a correlation between increased patient question-asking and other forms of involvement during encounters with physicians and improved health outcomes, such as briefer recoveries, decreased discomfort and need for medication, and improvement in chronic symptoms. Patients enacting participative behaviors also receive more information, elicit more support, and may influence the quality of care received from health providers. These results contrast strikingly with documentation of negative outcomes when patients, especially those hampered by the effects of illness, don't have the skills, motivation, or strength to press for clearer explanations from physicians, especially on such important topics as unexpected treatment outcomes and medication side effects, as well as confusion about whom to approach for help (Heymann, 1995). This brief review of active patient participation sets the stage for examining Joanne's story in detail. For her, active patient participation, enacted through her questions and open communication with her endocrinologist, has the objective of eventually achieving physician-patient mutuality and partnership, as well as improved health outcomes. With this background in mind, we re-enter Joanne's situation based on the health narrative she told to an interviewer. What the

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research literature does not adequately describe is the process through which a patient works toward a self-perception of being active and in control of her health care. Being an active patient and a partner with one's health provider is not an all-or-nothing nor a once-and-for-all state of affairs. In exploring Joanne's experience in some depth, we are able to glimpse personal development in progress. JOANNE'S STORY2 At my first visit with Dr. Winner, I wanted to see if he was going to be my doctor, and so I made my usual statements: "My goal here is to be in the best health possible. Diabetes affects everything that I do; it's become a major part of my life. I want you to put me in the grave with all my limbs. In other words, when I go, I want to go with all my limbs if possible, and if that means dying early by age 60, that's fine, just so that I can have all my limbs." He was kind of shocked. In my mind, I was being an optimist and I was pushing it, going for [age] 60, but he just sat back in his chair. I started to go into details, and then he said, "Okay, I understand... but I don't think it has to be that way. I'm going to treat you and do these tests and then I'm going to call you back in," and that next visit was when we started to have the open dialogue The second time that I saw Dr. Winner, I made up in my mind that he was my doctor.

Being able to tell the story of one's sickness to physicians, as well as to family, friends, and coworkers, is another way patients communicate active participation in their health care (Street, 2001). Individuals use story formats to make a disorderly world coherent and to justify their chosen ideas and actions (Bruner, 1990; Fisher, 1987). In addition to sense-making and warranting decisions, illness narratives also serve the functions of asserting control (especially in the case of diseases that seem to defy control), transforming the identity of the storyteller, and building community with fellow sufferers (Arntson & Droge, 1987; Sharf & Vanderford, 2003). During the process of telling the story, the distinct voice and style of the narrator becomes apparent. In response to the patient's narrating her illness during a medical consultation, the doctor may not listen well or give credit to the patient's rendition. On the other hand, the physician may provide a very understanding hearing of that account and take part in its further development. Thus, a patient's illness narrative may sometimes serve an additional purpose. The patient-physician relationship may be transformed and strengthened as a partnership when both contribute to a mutually understood story of the patient's sickness. The overarching plotline that Joanne emphasizes within her story is her struggle against diabetes by seeking ways to change her primary health narrative of how she lives and deals with this disease. Diabetes has existed in her family for a long time, and Joanne has witnessed many of its ravages. She speaks of these consequences in a rather matter-of-fact tone, as they are a regular occurrence and a natural part of her existence, even though the topics she talks about are of grave significance to her family and her own health: Joanne: I found out that I had diabetes at 25. You see, I come from a family of diabetics and we call it "the curse." On my mom's side of the family, her mother and her father had it. My grandmother was blind all my life, and she died of kidney failure as a result of diabetes. Half of my mom's brothers and sisters—there are nine of them—have diabetes and related illnesses that suggest heart problems and so forth. And on my dad's side of the family, it's worse, it's bad. Everybody on my dad's side of the family takes insulin and have had parts missing because— Interviewer: By "parts missing," you mean amputation?


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Joanne: Yes. My grandfather had no legs; my dad has no legs, and part of his chest is missing, and part of one hand missing, and he can only see out of one eye, but not very good. Also, my dad's brother has one hand missing, and one leg missing and so forth. And so it goes in the family. There are seven kids on my dad's side of the family; all of them have diabetes. Stories are not an exact recounting of real-time events, but instead are a re-creation of what happened in a way intended to advance a particular purpose for certain listeners. Narrative construction includes emphasizing certain scenes and sub-plots, while focusing on selected time sequences, motives, and values. Stories are told in the present time about past events, providing opportunities for the narrator to create a certain point of view or perspective. As Joanne adds to the background information about the disease that is central to her life, she describes her family's patterns of behavior with respect to diabetic management as extremely passive. In the process of characterizing her family, their symptoms, and the physicians who have treated them, Joanne identifies a hero (her current physician), villains (other doctors), and by-standers who are both innocent and complicit (her extended family). Most of her family has received care from local doctors, who she perceives as not aggressive enough in their care of diabetes. Joanne prefers a doctor who will take a more vigorous approach to dealing with diabetes, and this has set up a tension between her and the rest of her family members: And so when I told everybody at the family reunions that I was seeing an endocrinologist on a regular basis and that he demanded that I have lab tests and so forth, they were all shocked. And I told them it's the best thing that's happened because I actually feel good sometimes instead of feeling bad and tired and weak. I feel good, and when I start to feel bad, I know to call him and say, "Okay, something's not right, my sugar levels are out of whack, what's going on here? I need to come in and have this checked." And I said [to the family], "It's good to have an endocrinologist." No one had one, no one had heard of one, and by this time my dad already had one leg amputated, and he had never seen one. Most of us have the same family doctor, and nobody wanted to switch. So, when I started seeing another endocrinologist, it took my dad another year or two to see one.

Human beings are not only storytelling beings (Fisher, 1987), but also "storyliving" creatures (Allison, 1994). Any story about current life experiences shared with others is one in which the narrator is both in the midst of telling and in the midst of living or experiencing. Joanne's account highlights two critical conflicts ongoing in her life. The first is the tension between Joanne and her family regarding the treatment they have received, including her strong feelings toward doctors that she feels are not aggressive enough in their approach to diabetes. Her stance is evident in her discussions regarding actions taken about high cholesterol levels: And so Dr. Winner showed me what a good cholesterol level was and I was upset, because I didn't find that out until I was 34 years old and, apparently, I've had high cholesterol for the longest time. No one else in the family knew anything about cholesterol being an issue. So when I went home for Christmas I said, "I'm taking Zocor now. Anybody else taking anything for high cholesterol?" And they said, "Oh, no, no, no." I had an aunt that I asked, "Is your cholesterol level still running over 400?" And she said, "Well, the last time I went, it was 600 and something. In fact, they're thinking about doing something because of stroke or whatever else." I said, "Thinking about doing something? My doctor is having a cow because I'm at 325 and you're at 600 and something, and they're thinking about doing something?" I said, "I think they're suppose to be doing something."

Joanne wants a relationship with a doctor that is based on sharing of information. As such, she is well prepared when she goes to the doctor, and she expects that the doctor will respond in kind. This active stance that Joanne takes has not always led to good results:

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SHARF, HAIDET, KROLL I have questioned doctors in the past and they have gotten upset about it. When I take lists of questions with me to doctors, they say, "What are you doing, auditing me?" I used to be an auditor by trade, and so they say, "Every time you come in, I feel like you're auditing me," and I have to say, "No, I'm not auditing you. I just need to know these things, so I can help you treat me."

With Dr. Winner, Joanne finds someone who is willing to listen, who understands, and who will give her the information that she wants. However, even though Joanne describes herself as a very active patient, there are limits to her participation. The second major conflict evident in Joanne's narrative is her fight with lifestyle choices that contribute to ill health. Throughout her story, she describes herself as being engaged in a struggle to gain control over her diet. She describes food and wine as being her "major vices"; she sees these indulgences as worsening her diabetes, keeping her from reaching her goal of making it through life without amputation, and being a force with which she has to contend. She looks to Dr. Winner as a powerful ally, but also as an authority. Even though she comes to the relationship as a very active communicator, she concedes much power to Dr. Winner in the struggle to contain the food and wine: Interviewer: Of anybody or anything, where does the control lie with your diabetes? Joanne: Right now, for the first time in a long time, it's Dr. Winner. Usually, I would say that I am controlled by food and wine because I don't have will power, but now the control is with Dr. Winner because he has information on his side and has been giving me better medications to not only where I feel better; there are medications that are treating both this bad habit that Joanne has and this bad illness that she has. I have the sugar level that he wants me to have and I have the cholesterol level that he wants me to have, which all are major players in diabetes— Before, other doctors didn't have control over what medication they were giving me, and I didn't have control over my habit or my need or what I thought were my needs. The food and wine had control of the diabetes, and it was going downhill. Interestingly, even though Joanne credits Dr. Winner as having taken control of her diabetes, at another level, she is the one in charge of choosing who is acknowledged as an expert and with whom she aspires to partner. The power she yields is conveyed in an incident she describes in which her doctors give conflicting advice on medications: ... we had a battle going between my gynecologist and Dr. Winner.... they have been trying to switch medications for each other and of course, naturally I'm going to go with Dr. Winner's recommendations because I feel best under him Well, Dr. Winner said, "The gynecologist didn't think about your kidneys, did he? The medication I started you on is what you need. Which one would you rather have: good kidneys or hair growth?" I said, "Well, you know, I think the good kidneys are a good thing." So, I called the gynecologist and said: "Well no, I'm going with Dr. Winner."

Despite not yet feeling that she can manage diet issues on her own, Joanne visualizes a future in which she will be able to take a more active role in terms of managing her illness: Because Dr. Winner and I work so closely together now, that in the future I think I will have more control over the diabetes, which is very important to me. You probably can tell that I'm kind of a control freak. I think in the future I will be able to be a major player in fighting the diabetes.

Thus far, we have highlighted the main issues that constitute Joanne's illness narrative: having diabetes as a consequence of family history, repudiating her family's passivity in dealing with this life-altering and life-threatening disease, setting her own objectives for survivorship,


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and affirming Dr. Winner, her endocrinologist, as the major authoritative force in coping with diabetes. In our continuing analysis of Joanne's story, we examine the complexities of her ongoing process of changing the plot of her life story and her striving to be a "major player" on her own terms.

THE PLOT THICKENS: INTERLOCKING STORIES Dr. Winner recognized something in me and he told me, "You're extremely competitive, so, what I want you to do when you go to walking" — I have to walk from the parking garage all the way down to the building that I work in. He was saying, "And how often do you do that?" I told him at least twice a day going and coming. He said, "Well, try to make an exercise out of it." Now I find in the morning that when I get out, you know, I'm looking for that person who's walking fast and [I] say, "I'm going to try and beat this person, see if I can get there before that person does."

In this interview, Joanne portrays what she has been living, a multi-layered story of diabetes. Her family's experience with this disease, strengthened genetically through marriages, constitutes an ongoing epic, affecting successive generations and taking a gruesome toll in quality and length of human life. Given its prevalence, even with the consequences of impairment and premature death, living with severe diabetes has become routinized within Joanne's extended family. Patients' ways of explaining symptoms, causes of disease, and possible remedies are known as explanatory models. An understanding of a patient's explanatory model helps a physician to decide how to approach clinical care with that individual (Kleinman, 1988). The dominant explanatory model within Joanne's family is one of diabetes as hereditary, an unavoidable fate. Driven by this explanation, the family has taken what Joanne considers a comparatively passive and reactive stance in terms of health-seeking behaviors. They see the same family doctor that they have seen for years. That practitioner provides them little information, and what information they have received has sometimes been inaccurate. Even when the family receives updated information from an endocrinologist or from Joanne herself, they usually choose to prioritize the authority of the family doctor. As Joanne's testimony reveals, the results of this routine have been disastrous for her family's well-being. For their part, Joanne and her brother (who also has the disease) cynically refer to diabetes as "the curse": ... it's that family curse that we have And so, yeah, we blame our parents, at least I do. "Couldn't marry a non-diabetic could you? You just had to double—or triple-our chances of getting it [by marrying each other]."

Joanne also describes a transformation of identity triggered by her diagnosis. Although she grew up in the extended family saga of diabetes that included not only the litany of missing limbs but other life-threatening problems ("Who had a stroke or a heart attack since the last family reunion?... and we all assume that it is related to the diabetes, and it is"), she considered herself "blessed," thinking she had been spared. However, at age 25, she discovered that she, too, shared the family's fate: By the time I found out that I had it, it was full blown. I had the same family doctor my dad and everybody else had, who never checked me for it. The doctor that finally told me I had it said, "You probably had it all along because when you walked in the door I could tell, I knew that you were a diabetic."

Not only was Joanne faced with adapting to her illness, she also struggled with a sense of betrayal, having been denied crucial information:

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SHARF, HAIDET, KROLL All I wanted to do was try and correct it, and see if there was anything that we could reverse, if I could go back to not being a diabetic. I thought, "I don't want to be like everyone else."

At this point, emplotment, meaning a focus on "what story am I in" (Mattingly, 1998, p. 72) becomes a predominant element in Joanne's narrative. As onset and adaptation to serious illness inevitably cause patients' life stories to change in many ways, how Joanne answers this question mediates between the multiple forces that created who she was and who she has become through the illness and is critical to her ongoing well-being. Joanne made the decision to do all that she could to construct a different plotline for herself than the one enacted by the rest of her family. Her effort was facilitated by changing both the scene and the physician character within her narrative. By moving to another city and searching for an endocrinologist, in lieu of the family doctor, to advise her health care, she very purposely broke with the family epic. Although she was not able to change her diagnosis, she realized that she could change the way in which she lived the experience of illness. By her own account, Dr. Winner played a key role in helping Joanne find an alternative, more satisfying story. Through the process of narrative collaboration, patient and physician engage in history building versus the more commonly used metaphor of the doctor taking a medical history or gathering data from the patient (Haidet & Paternini, 2003). Together, they developed a plot to "locate desire" (Mattingly, p. 107), that is, to find the motivating factors for Joanne to cope with or overcome the problems engendered by diabetes. For instance, in the excerpt at the beginning of this section, Dr. Winner uses recognition of Joanne's competitive nature to turn a daily walk to and from the parking garage into a race, so that the walk becomes good exercise for her. At the time that Joanne gave this interview, she had transitioned from a narrative of acceptance to a narrative of struggling for control. At one level, that struggle focused on gaining control of dietary habits. This is a problem facing every individual diagnosed with diabetes. In Joanne's case, as she clearly explains, it is an issue deeply rooted in family traditions and regional culture: We're from Louisiana. In that area of the country, food and wine will probably be the top two vices for anybody. So, getting diagnosed with diabetes was a big let down for me because I love to cook, and I also collect wines. I love wines. I look at a list of things that they recommend that people should not eat in general and things that diabetics should not eat. I mean everything, if you put those two lists together, everything on them is what we eat on a regular basis in our family.

With this background, it is not surprising that Joanne finds herself in a continuous and difficult effort to make the necessary changes in her dietary lifestyle. She credits Dr. Winner for helping her to find the motivation for coming to grips with her vices. Through her discussions with him, she comes to realize that although she cannot change the genetic script underlying her disease, it is possible for her to change her diet and exercise patterns. Taking charge of these issues can potentially change the outcomes of the diabetes saga for Joanne and allow her to achieve her objectives of living longer and with all her body parts intact. There is a second angle to be considered in Joanne's narration of struggling for control, namely, the relational perspective. In response to the interviewer's question about where the control for her illness lies, she unhesitatingly states that it is with her physician. Her reasons for acknowledging Dr. Winner in this way are multiple; he provides information that other clinicians have not and he has prescribed medication that helps Joanne to maintain sugar and cholesterol levels in a desirable range. Repeatedly, she confirms her confidence in her endocrinologist: Dr. Winner is my primary doctor, because sooner or later, everything gets back to him. Whatever doctor I go see is going to talk to him.


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Not only does Dr. Winner's advice trump the recommendations of other physicians, to Joanne, he is the counter-balance to her own intrinsic weaknesses: He has the most control because he still has to do the prodding. He still has to come in with more and stronger medications because I don't have control of the food and the wine. So, to me, he has the most control over the diabetes, because if he stopped giving me the information and everything I need, then it would be out of hand completely, because I wouldn't have the will power to try to get it under control myself.

The struggle for control as depicted in Joanne's narrative is complex. In the course of telling her story, she makes very clear that she has redefined her life goals in relation to her illness; she has chosen to prioritize Dr. Winner's advice over recommendations from other physicians; she questions and monitors medical information presented to her; and she has made some progress in making lifestyle changes, such as exercising more regularly. In other words, Joanne has exerted a great deal of self-management, using her own resources in coming to grips with her illness, even though she identifies her physician as the person who is in charge.

BRINGING THE STORY TO CONCLUSION: DIFFERENTIATING PARTICIPATION AND PARTNERSHIP I want to be happy and have a good life, the best possible life, and that means having good health, if it's possible. I will do what I can and, Dr. Winner, he will do what he can to make sure that happens. His job is to monitor and tell me when I'm getting out of whack, or it will cause potential health problems, or F m going down the wrong path His role is to make sure that I can maintain and have good health.

This review of Joanne's health narrative immerses us in details that are, of course, unique to this young woman's disease, family history, and cultural upbringing. Yet, in some important ways, Joanne is emblematic of many people; she longs for a story that ends "happily ever after." Though she is not pleased with herself for lacking sufficient willpower, she sees herself working toward being more in charge of her own health situation, a move that will shift the terms of her relationship with her doctor: Joanne: ... he will probably be taking more of the role that he should have; that is, one that comes in only when there's an issue instead of having to monitor all the time. Because it's my disease; I have it. I should be the one because I have the capabilities with the testing machines and whatever that monitor my disease. Interviewer: So, when that day when you have more control arrives, Dr. Winner will be more of a consultant than a controller? Joanne: Yeah, and absolutely. Geist-Martin, Ray, and Sharf (2003) identify communicative competencies that characterize proactive patients. The first of these is agenda-setting, meaning that highly activated patients plan in advance what issues they want to bring to their doctor's attention and state these concerns at the beginning of the interview. Second, this kind of patient takes an active role in sharing information, which means an ability to "tell your story succinctly yet assertively, highlighting those factors that describe your concerns, symptoms, and ideas about what is going on" (p. 334). Third, as mentioned previously, the ability of patients to raise questions with the physician has proven to be one of the most significant and influential communicative acts, including queries about technical terminology or alternative treatment options. On all

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three counts, Joanne has participated actively with Dr. Winner, as well as other practitioners she with whom she's consulted. The fourth communication competency involves assuming an active role in negotiating treatment decisions; patients vary as to the extent they wish to be involved in participatory decision making, but the trend is toward increasing involvement (Deber, Kraetschmer, & Irvine, 1996). This is the point with which Joanne finds herself struggling in terms of needing to be directed by the endocrinologist. Eventually, she hopes to be a more proactive self-manager, with Dr. Winner as her consultant. Health empowerment is a state of feeling relatively powerful and in control of one's life on the basis of concentrating time, effort, and personal resources to improve health-related problems (Geist-Martin et al., 2003). Joanne is on her way, but she's not quite there yet. In fact, Joanne represents many, and perhaps most, patients. Few of us are naturally well equipped to assertively collaborate with our physicians and assume the role of active health decision maker. The communication competencies required need to be further defined, honed, and practiced. People, especially people striving to cope with serious illness, are often not in the best place to counter the centuries-old attitude of deferring to medical experts and making their own opinions, values, and feelings known. At the same time, Joanne represents an increasing population suffering from chronic, ongoing diseases that will persist throughout their lifetimes and must be largely managed in patients' own environments rather than medical facilities. Though challenging, it is especially important for such seriously ill individuals to come to grips with what level of health-related participation and self-management is appropriate for them. Assuming increasing degrees of involvement and self-responsibility tends to occur and improve over time and experience. Active patient participation, which Joanne is both enacting and striving toward, can be portrayed on two continua: the continuum of engagement with the illness experience, and the continuum of negotiated control with regard to illness decisions. In detailing these two spectrums, we are claiming a distinction about active patient participation that previously has been treated as a single entity. The sequence of developments represented in each continuum is important conceptually. The first continuum describes the degree to which a person is either engaged with her own illness experience or not. Engagement from this perspective implies a sense that one can influence the course of one's own experience of illness and health-seeking. The opposite of engagement is fatalism, a sense that one's course of illness is predetermined and that no one (not patient, doctor, family, etc.) can change the outcome or the way that the experience will unfold. A state of high passivity makes a collaborative relationship with one's physician irrelevant, because in such a state, control over illness is not achievable. A patient in a state of passivity, therefore, is unlikely to partner with his physician, because health professionals, in the patient's eyes, are helpless as well. At the other end of this continuum is a state of high activity and deep engagement. Individuals at this end have an empowered sense of being able to influence the lived experience of illness, without discounting a realistic perception of what factors are and are not changeable. As her interview documents, Joanne is closer to the active end of the engagement continuum, though she is not yet in the most fully developed position. Continuum 1: Engagement with the Illness Experience Passive (fatalistic)

A Where Joanne is now

Active (empowered)


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The second continuum describes the spectrum of negotiated partnership in making health care decisions and managing chronic illness. This continuum recognizes that illness presents a series of decisions that can impact the way events will unfold, as well as the meaning of such events. Both patient and practitioner can have varying levels of influence over these decisions. It is important to note that a person can be a very active participant in terms of engagement with the illness and health-seeking experiences (Continuum 1) and still cede much of the influence over health-related decisions to the doctor. In this case, the person is still an active participant by intentionally deciding to confer primary influence on the decision process to the doctor. This is Joanne's current developmental position. She aspires to eventually move nearer to the patient influence end of the continuum, though not to the extreme end; instead, she wants to modify the collaboration she has already established with Dr. Winner. Continuum 2: Negotiated Partnership in Health Decision Making and Illness Management

We end this chapter with an observation from a narrative point of view. Joanne ascribes power to Dr. Winner on the basis of his willingness to impart expert information, ability to prescribe helpful medications, and impact in assisting her to adopt more healthy behaviors. In addition to this list, just as important—or perhaps even more important—Dr. Winner has helped Joanne to figure out what story she is in; he has made a huge difference in serving as a coauthor in Joanne's unfolding account. More specifically, she perceives that he has been instrumental in illuminating narrative options, thus enabling her to move from the fatalistic family saga with a predictably tragic conclusion to a more optimistic plotline with feasible alternatives that she can make happen with a potential for a happier ending.

RELEVANT CONCEPTS Active health participation: An individual's degree of participation in his or her own health care and maintenance, including how engaged one is with her or his own illness or health conditions and how one negotiates control of health care decision making with health care providers. Emplotment: The process of an individual becoming aware of what life plot or story he or she is enacting at a particular point in time. Engagement with illness experience: The extent to which an individual senses that he or she can influence the course of one's own experience of illness and health-seeking. Health narrative: The story of one's illness or health conditions, typically referring to how patients relate such stories to their physicians and other health professionals, family, friends, coworkers, etc.

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History building: A new metaphor to describe a physician and patient working together to construct a mutually meaningful explanatory model for understanding the patient's health conditions and how best to approach them. This metaphor contrasts with the traditional metaphors of "history taking" and "data gathering," which imply that the physician is actively eliciting selective pieces of information from the more passive patient. Partnership between patient and physician: The spectrum of negotiated interactions and relationships enacted by a patient and a physician in making health care decisions and managing chronic illness.

DISCUSSION QUESTIONS 1. How would you describe your own narrative of health and wellness (considering heredity, culture, family events, experiences with health care, etc.; this could be a story about an episode of illness, but it doesn't have to be)? How is your narrative similar to or different from the one that other members of your family tell? In what ways have you adopted or modified that narrative over time? 2. Who are the main characters in your health narrative? How are these characters positioned within your story (heroes, villains, bystanders, victims, etc.)? 3. What functions (i.e., identity transformation, sense-making, exerting control, decision making, building community) has this health narrative served in your experience? What meaning^) does this narrative imply in terms of your goals and desires for your health and for health care? 4. In reference to the narrative that you previously described, how would you position yourself on Continuum 1? Are you satisfied with this position or do you aspire to be elsewhere? In either case, explain why. 5. Think about the health provider you consider to be most important or influential. In relation to this practitioner, how would you position yourself on Continuum 2? Are you satisfied with this position or do you aspire to be elsewhere? In either case, explain why. 6. Identify a time when you changed a personal behavior in an effort to improve your health and wellness. What information or what person was instrumental in your choice to change the behavior? Were you able to sustain the behavior change?

ACKNOWLEDGMENTS This project was cofunded by grant number PO1 HS10876 from the Agency for Healthcare Research and Quality and the National Center of Minority Health and Health Disparities. Dr Haidet is supported by a career development award from the Office of Research and Development, Health Services R & D Service, U.S. Department of Veterans Affairs. We are grateful to "Joanne" for contributing her story to this project.

ENDNOTES 1

Because Joanne's story focuses on her relationship with Dr. Winner, her endocrinologist, we have limited our own review of literature and discussion to the patient-physician relationship, rather than attempting to include all types of practitioners. That said, much of what we discuss is applicable to the full range of clinical providers. 2 Joanne's story was told in the form of a 90-minute interview, one of several conducted for research examining how patients explain how they live with chronic illness. The interviewer was one of the authors of this chapter (PH).


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The interview was audiotaped and later transcribed, resulting in over 30 pages of single-spaced dialogue. In choosing excerpts to tell a brief version of Joanne's story for this chapter, we have been forced to be selective in piecing together quoted remarks, with minor editing of Joanne's original words for purposes of fluency and continuity.

REFERENCES/SUGGESTED READINGS Allison, J. M. (1994). Narrative and time: A phenomenological reconsideration. Text and Performance Quarterly, 14, 108-125. Arntson P., & Droge, D. (1987). Social support in self-help groups: The role of communication in enabling perceptions of control. In T. Albrecht & M. Adelman (Eds.), Communicating social support (pp. 148-171). Newbury Park, CA: Sage. Bruner, J. (1990). Acts of meaning. Cambridge, MA: Harvard University Press. Deber, R., Kraetschmer, N., & Irvine, I. (1996). What role do patients wish to play in treatment decision-making? Archives of Internal Medicine, 156, 1414-1420. Fisher, W. (1987). Human communication as narration: Toward a philosophy of reason, value, and action. Columbia: University of South Carolina Press. Geist-Martin, P., Ray, E. B., & Sharf, B. F. (2003). Communicating health: Personal, cultural, and political complexities. Belmont, CA: Wadsworth. Greenfield, S., Kaplan, S. H., & Ware, J. E., Jr. (1985). Patients' participation in medical care: Effects on patient outcome. Annals of Internal Medicine, 102, 520-528. Haidet, P., & Paternini, D. A. (2003). Building a history rather than taking one: A perspective on information sharing during the medical interview. Archives of Internal Medicine, 163, 1134—1140. Heymann, J. (1995). Equal partners. Boston: Little, Brown. Kleinman, A. (1988). The illness narratives: Suffering, healing & the human condition. New York: Basic Books. Mattingly, C. (1998). Healing dramas and clinical plots: The narrative structure of experience. New York: Cambridge University Press. Quill, T. E. (1983). Partnerships in patient care: A contractual approach. Annals of Internal Medicine, 98, 228-234. Roter, D. L., & Hall, J. A. (1993). Doctors talking with patients/patients talking with doctors: Improving communication in medical visits. Westport, CT: Auburn House. Roter, D. L., & McNeilis, K. S. (2003). The nature of the therapeutic relationship and the assessment of its discourse in routine medical visits. In T. L. Thompson, A. M. Dorsey, K. I. Miller, & R. Parrott (Eds.), Handbook of health communication (pp. 121-140). Mahwah, NJ: Lawrence Erlbaum Associates. Sharf, B. F. (1984). The physician's guide to better communication. Glenview, IL: Scott, Foresman. Sharf, B. F., & Vanderford, M. L. (2003). Illness narratives and the social construction of health. In T. L. Thompson, A. M. Dorsey, K. I. Miller, & R. Parrott (Eds.), Handbook of health communication (pp. 9-34). Mahwah, NJ: Lawrence Erlbaum Associates. Stewart, M., Brown, J. B., Weston, W. W, McWhinney, I. R., McWilliam, C. L., & Freeman, T. R. (1995). Patientcentered medicine: Transforming the clinical method. Thousand Oaks, CA: Sage. Street, R. L., Jr. (2001). Active patients as powerful communicators: The linguistic foundation of participation in health care. In W. P. Robinson & H. Giles (Eds.), The new handbook of language and social psychology (2nd ed., pp. 541-560). Chichester, UK: John Wiley. Waitzkin, H. (1984). Doctor-patient communication: Clinical implications of social scientific research. Journal of the American Medical Association, 252, 2441-2446.


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Direct Marketing Directs Health Care Relationships?: The Role of Direct-to-Consumer Advertising of Prescription Drugs in Physician-Patient Communication Rebecca J. Welch Cline Barbara Ann Karmanos Cancer Institute/ Wayne State University Henry N. Young University of California, Davis Today, when we watch television or read our favorite magazines, we are exposed routinely to prescription drug advertising. Direct-to-consumer advertising (DTCA) of prescription drugs arguably functions to provide us with information about medical conditions and treatment options. At the same time, DTCA has sparked heated debate regarding its influence on physicianpatient communication and thus on relationships with our physicians. This case explores and illustrates the issues debated among physicians regarding the value of DTCA, and variations in the nature of the advertisements, patients' communication approaches with physicians as a result of exposure to DTCA, and physicians' responses to patients' attempts to communicate with them about advertised products.

BACKGROUND DTCA is "any promotional effort by a pharmaceutical company to present prescription drug information to the general public through the lay media" (e.g., popular magazines and television; Bradley & Zito, 1997, p. 86). Cline and Young (2004) review the history and growth of DTCA in the United States. Rapidly growing DTCA expenditures and routine exposure of consumers to DTCA suggest its potential for influence. Until the early 1980s, the pharmaceutical industry marketed drugs to physicians via advertising in medical journals and visits from company representatives. In 1981, the industry proposed marketing directly to consumers, arguing its educational benefits. Since then, the Food and Drug Administration (FDA) eased 53

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regulations on DTCA, which sparked the exponential growth of by-name advertising of prescription drugs. DTCA spending grew from $25 million in 1988 to more than $2 billion in 2002. From a consumer perspective, DTCA's magnitude lies in the number of advertisements consumers encounter. Popular magazine readers may be exposed to four or more ads in some magazines (e.g., Better Homes and Gardens, Prevention, Reader's Digest). Over time, this exposure continues to increase. For example, the February 2003 issue of Reader's Digest contained 11 prescription drug ads, several associated with serious medical conditions (e.g., preventing a second heart attack or stroke, treating diabetes and depression). In fact, 15% of the magazine's pages were devoted to DTCA.

DTCA AND THE PHYSICIAN-PATIENT RELATIONSHIP DTCA's growth has fueled debate regarding its influence on health care. One critical issue centers on DTCA's potential to alter the health care relationship. Both proponents and opponents argue that DTCA is changing the health care relationship from a traditional paternalistic model toward a participatory and possibly consumerism model (Cline & Young, 2004). However, they disagree about the consequences of that change. Arguments vary from DTCA "builds bridges between patients and physicians" (Holmer, 1999, p. 380) to objections that DTCA undermines the relationship and promotes conflict (Hollon, 1999). Advocates of DTCA predict positive relational and health care outcomes. They argue that DTCA empowers consumers by educating them to recognize symptoms and motivating them to initiate discussions with health care providers about conditions that otherwise may go untreated. Educated patients are better enabled to act as informed decision makers and may be more likely to comply with physicians' recommendations. Informational empowerment yields relational consequences by encouraging patients to take a more active role, thereby equalizing relational control, as they seek partnerships with physicians (e.g., Holmer, 1999). In turn, public health may be improved by enhancing safe and effective treatment of diseases that tend to be underdiagnosed and undertreated. Opponents see growth in DTCA as driven by financial considerations, representing an alternative marketing strategy. They contend that DTCA offers "information of suspect quality and thus minimal benefit" (Hollon, 1999, p. 382). One key concern is that DTCA will lead to increased consumer demand for medications, yielding greater conflict between provider and patient, with presumed negative consequences for their relationship (Hollon, 1999). The result, opponents argue, is increased health care costs due to greater use of the health care system, prescribing of unnecessary drugs, and resulting adverse medical outcomes. Thus, both sides contend that DTCA influences the health care relationship by encouraging patients to take a more active role in their health care. The underlying premise of DTCA's influence is that features of the advertisements encourage a more active patient role by suggesting new social norms and training consumers to interact more actively with doctors. Social cognitive theory (Bandura, 1994) helps to explain how DTCA may function in this manner. Through social modeling, individuals observe and learn to associate accompanying rewards with the behavior of others; in turn, those rewards become motivators for the observers' own behavior. Unlike most products, consumers need the cooperation of a third party to purchase prescription drugs. Thus, successful ads must motivate and train consumers to seek and interact appropriately, credibly, and persuasively with physicians. That modeling may occur visually, via text, and by way of "meta-messages" within ads that might motivate patients by associating rewards (instrumental, identity, and relational) with products and suggesting how patients might communicate with their physicians to obtain those products (Cline & Young, 2004).

5. DIRECT-TO-CONSUMER ADVERTISING

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DOCTORS DEBATE THE ISSUES Five doctors, who have known each other professionally for many years, are attending a medical association meeting. They just heard a session in which representatives from pharmaceutical companies, physicians, and consumer advocates debated the impact of direct-to-consumer advertising on the physician-patient relationship. Doctors in the audience expressed strong opinions about DTCA, but were split regarding whether the impact was primarily positive or negative. Two of the five doctors had been vocal in the discussion portion of the formal session. Dr. Robert Nelson argued that DTCA ultimately hurts health care by encouraging patients to demand inappropriate medications, thereby placing undue pressure on physicians, resulting in faulty prescribing practices. In contrast, Dr. Peter Smith contended that doctors meet patients' health care needs better as a result of DTCA because the advertising gets patients interested in their health care and committed to carrying out mutually determined treatment regimens. When the meeting broke up Drs. George Capel and Joseph Callahan walked up to Drs. Nelson and Smith, who were continuing the debate. George interrupted, saying: "OK fellas, clearly we aren't all going to agree on this, but I bet we can agree to find a good steak house with some fine wine where we can do some catching up and continue this debate too." They agreed to meet for dinner. The scene is a restaurant near the convention center. When the doctors met at the restaurant, Peter was accompanied by a fifth physician, Dr. Katherine Wallace. Peter said, "You all know Katherine." The other doctors greeted Katherine warmly, having known and respected her for years. Peter continued, "I ran into Katherine after that last meeting and she knows something about this drug advertising issue. I thought she should join us and throw in her two cents worth." The doctors get a table, order some red wine, and spend much of the dinner catching up on events of the past year in their personal lives and professional practices. As the doctors talk, conversation returns to the DTCA debate. "You know," said George, "I feel like my practice really is changing. And I think part of it has to do with those drug ads. They put pressure on me and on how I practice medicine. I don't really see all of the benefits some of you claim." The doctors returned to the issue, debating the pros and cons of DTCA. The group got on a roll about the down side of DTCA. Bob chimed in, "Drug advertising is causing some problems with our patients. Not only that, I think many doctors probably practice worse medicine as a result, present company excepted, of course!" "Well, I do agree that the ads make some people think there is a 'pill for every ill,'" argued Peter. "They want a 'magic' formula, an easy solution, instead of exploring other ways of improving their health where they might actually have to make some personal effort." "It's worse than that," said Joe. "It used to be that my patients understood that / had been to medical school, spent years in residency, and actually knew something more than they did about medicine. Now it seems like they all think they are the doctors and we just need to write the prescriptions. I get tired of patients' disrespect and distrust. I wish they would just let me do the doctoring. Most of them really don't know what they are talking about and just pick up on stuff from the ads. They don't understand the technical material and waste my time with questions. It's frustrating and pretty insulting too!" "But you know," Peter countered, "when patients ask questions because of seeing ads, it seems they really want to have a conversation. To me, they seem more motivated to understand and participate in their care than to ride roughshod over me. I can't tell you how many times those 'pesky' questions led me to pay more attention to their symptoms; I probably made a quicker diagnosis too, which means they got on with their treatment more quickly and didn't have to come back a second or third time. You can bet the HMOs like thatl" "I know those advertising questions can seem annoying," Bob agreed, "but I also think we have to resist changing how we prescribe just because a patient sees an ad or asks a question."

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"Sometimes they may just want to get information or understand why a drug isn 't the right thing for them. I think it's a good thing when patients show interest in their care, even if we don't agree with what they may propose. We just need to stick to our guns when they ask for something we know isn't appropriate," Joe continued the benefits argument. "And of course, if we diagnose more accurately and more quickly, and if the patients themselves feel like they've had a say, then we end up with healthier patients who are costing the health care system less. That's just good business sense." George sensed the conversation had gotten away from recognizing problems with the ads themselves. "Wait a minute, though," he said, "we're talking about the patients, but the ads really cause those problems. They're misleading and inaccurate; they leave out a lot of the risks or make them sound like minor issues but make the drug seem effective; that's unrealistic and is simply false advertising." "I think what happens then," said Bob, "is we get all of these questions about drugs, often not suited to the particular patient, and then we feel pressured to prescribe what they seem to be 'demanding.' I know I sometimes feel conflict between what patients say they want and what I know is good medicine." George added, "And that, my friends, is the crux of the matter. We may not be able to practice good medicine without running the risk that patients will be disappointed or go find another doctor who will prescribe what they want." "But one way to look at those ads," countered Peter, "is that they really do inform and educate our patients. Because of the ads, and some other factors too, like the Internet, they often know a great deal more when they come to see us than they used to. I think it's easier to explain our medical reasoning to informed patients who want to play a role in their care than to the patients we see who don't offer up relevant information or ask questions; then we feel like we're trying to solve a medical mystery without some of the clues we depend on our patients to give us." Peter suddenly realized that the men had been vocal but that Katherine hadn't said a word; he knew from an earlier conversation that she actually knew quite a bit about DTCA, how it works and the effects it has. Turning to her, he said, "You know, you're really the expert here. I understand that you have researched drug advertising and spoken at many meetings. What's your take on advertising drugs directly to patients?" Katherine paused, "Well, you should know that all of you have made the same points that have been debated in major medical journals over the past couple of years. There's a lot of conflict on this issue, so it's not surprising that you don't all agree. Plus this is a relatively new thing for us as doctors. As we all know, the pharmaceutical companies used to rely entirely on drug reps and ads in medical journals as a way of letting us know about new products and trying to persuade us to use them. It seems like the economics of health care means those companies have figured out that they may be able to have even greater influence on us by advertising directly to consumers, especially at a time managed care is trying to keep costs down." "Don't you think," George jumped in, "that this is just an economic boon to the industry and really has nothing to do with good medicine?" "Yeah," said Joe, "and in the course of things, we're losing our authority as doctors!" "Hang on a second, fellows, let's hear what Katherine has to say. She really knows this stuff better than we do," Peter said. Bob jumped in too and said, "Yes, I'd really like to know more. We all have opinions but, like medicine itself, there must be some evidence about advertising's actual effects. Tell us what you know, Katherine." "OK guys, just understand that we really don't have a lot of direct evidence yet about DTCA's effects. We all know that the ad companies have figured out some ways to try to influence consumers. They give consumers information about medical conditions and drugs


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for treating those conditions, as Peter said; those ads do some other important things too. Drug ads are chock full of cues that attract patients to the ads and then to the particular drugs. Some research shows that the ads repeatedly make connections between the drug and things people value, especially two things. Through the pictures and text in the ads, the drug companies connect taking a particular drug to being the kind of person the consumer wants to be, such as healthy, active, and happy. Those ads also imply that patients gain some relational benefits by using the particular drug. The pictures show people interacting with family, friends, or coworkers. So the ads seem to be saying that patients can have better self-images and better social lives by using the advertised drugs. Besides that, I bet you've noticed that the ads actually tell patients what to say or how to talk to their doctors. It's no wonder we think communication with patients has changed. In most ads, you'll see several statements telling patients to ask certain questions about the drug or talk to their doctors about certain symptoms." George responded impatiently, "OK, that's all fine and dandy; they've figured out how to market products successfully. But what about the effects on how patients act when they see us?" "That's the big question of course," Katharine replied. "We do know that patients pay attention to DTCA and that they are using information from the ads as a way to start conversations with their doctors. I saw one study that said that the majority of patients think DTCA contains the information they need to talk with their doctors; of course, that's what they think, not necessarily actually the case! Ironically, although many doctors really hate these ads, most of us docs agree that the advertising is encouraging patients to be more active in their health care. So, it may come down to whether we think that is a good thing or not." There was a pause as the group digested this last point. Bob returned to the quality of prescribing issue. "We've talked a lot about the effects of the ads on patients' communication. But do you know anything about how docs' prescribing behavior might ultimately be affected? That's what concerns me, that we not trade off good medicine just to satisfy our patients." "Again," replied Katharine, "the research doesn't show a direct effect. But it does say that doctors have become more willing to prescribe what patients request, or at least to consider those requests seriously. I know, in my own practice, I try to use those requests and questions as a basis for understanding my patients' concerns. It gives them a way of interacting more with me; after all, being a patient with folks like us really can be intimidating!" They laughed as they recognized that while they were feeling vulnerable to the effects of DTCA, their patients routinely feel vulnerable in their health care conversations. "After all," concluded Bob, "we are the ones in control of prescriptions. No matter how pushy patients are, we are the only ones who can prescribe." "Well, gentlemen, it's been an enjoyable evening," said Katherine. "You have some good insights about these issues; thanks for sharing them," offered Bob. "You've given us some things to think about," admitted George; Joe nodded in agreement. Although these doctors disagreed about the role of DTCA in health care, they had aired significant issues found not only among their individual practice experiences, but also in debates published in major medical journals.

THE CASES: DTCA AND PHYSICIAN-PATIENT COMMUNICATION

Executive "Orders"? John Nixon, a 55-year-old white male, is an executive officer of a top Fortune 500 business. His major responsibilities involve overseeing day-to-day operations that are vital to the success

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of the company. John's job is extremely stressful and time consuming; however, he enjoys his work, as well as the power and status that accompany his position. John's personality fits the stereotype of a "driven" executive; he is domineering and controlling, in both his professional and personal lives. Background. During a flight while traveling for business, Mr. Nixon briefly flips through the latest issue of Time. While scanning the magazine, he sees an advertisement for the prescription medication Viagra and pauses for a second, thinking to himself, "I heard that this stuff spices up your love life." The ad shows a man and a woman, dressed in evening attire, dancing in what appears to be a ballroom. Both are smiling broadly and appear joyful and animated. The advertisement states only the name of the medication, "Viagra (sildenafil citrate) tablets," and "Let the dance begin." Glancing at the Viagra advertisement, Mr. Nixon thinks that lately his sex life with his wife hasn't been as fulfilling as he would like and that Viagra may be the perfect remedy. He decides to see his physician for a prescription. As soon as his flight permits telephone use, Mr. Nixon contacts his secretary to make an appointment with his doctor for the next day. The Doctor Visit. A few minutes after being seen by the nurse, Dr. Robert Nelson walks into the examination room and says, "Mr. Nixon, how are you today?" "Just fine, Dr. Nelson," Mr. Nixon replies. "That's good. So, what brings you in today?" In a concerned but somewhat demanding tone, Mr. Nixon says, "Dr. Nelson, after 30 years of marriage, I need a little something extra; I want a prescription for Viagra." Dr. Nelson responds, "Many men are using Viagra for erectile dysfunction. I know this can be a difficult problem to talk about. But I have to ask, can you achieve an erection?" Sounding indignant and authoritarian, Mr. Nixon responds, "Yes! / am in control of my body. My only problem is that my sex life has lost some of its luster; it's just not what it used to be and Viagra should help. I don't have any other health problems, so if you'll just give me the prescription we both can get on to more important matters." Dr. Nelson replies calmly, although feeling somewhat taken aback, "Mr. Nixon, Viagra is used to treat erectile dysfunction. From what you have told me, fortunately you do not have problems attaining an erection; therefore, this drug would not help you." Mr. Nixon raises his voice, "Look, Dr. Nelson, I know what I need. Just give me a prescription for Viagra!" Dr. Nelson pauses to gather his thoughts, noting that his patient is not going to be happy with his decision. "I would be irresponsible if I gave you a prescription for a medication that I have no reason to believe will be beneficial. All medications have the potential for side effects and can be harmful. It's inappropriate to use a medication without a valid indicator. I'm sorry." After arguing with Dr. Nelson briefly, Mr. Nixon storms out of the office without a prescription and begins thinking about making an appointment with another doctor.

Heartburn and Professional Heartache? Anna Klowicky is a 32-year-old restaurant critic for a major newspaper in a large metropolitan area. She suffers from heartburn. This poses a serious problem, as Anna's job requires her to sample a variety of ethnic cuisines that often are inappropriate for her medical condition. Currently, Anna is taking Prilosec, which recently changed from a prescription to an over-thecounter medication. It provides her with excellent relief. She had obtained her prescription for Prilosec after seeing several specialists and finally finding one who gave her the medication she wanted.


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Background. After work, Anna enjoys relaxing on her porch and talking with her neighbor, Flo Johnson. One evening, Flo asked, "Anna, how's your heartburn doing?" Anna replied, "Oh, its all right, I haven't had many problems lately. And yours?" Flo said, "No problem at all, not since I tried that new drug. I think it's called Nexium. Seems to work better for me than Prilosec did." Anna perks up, "Really? I've been taking Prilosec awhile; maybe I should try the stuff you are on." Thumbing through an issue of Better Homes and Gardens a few minutes later, Flo says, "Look, here it is; yep, it's Nexium" and showed Anna an advertisement. The headline of the advertisement says, "Today's purple pill is Nexium, from the makers of Prilosec." The advertisement depicts a woman with a slight smile holding a Nexium pill. The body of the advertisement reads, "Relieve the heartburn. Heal the damage. For many, it's possible with Nexium. If you suffer from persistent heartburn 2 or more days a week, even though you've treated it and changed your diet, it may be due to acid reflux disease. And that can be serious. Because, over time, acid reflux can erode or wear away the delicate lining of your esophagus (erosive esophagitis). Only a doctor can determine if you have this damage. Control heartburn for 24 hours. For many people, prescription Nexium—once daily—provides complete resolution of heartburn symptoms and heals damaging erosions of the esophagus caused by acid reflux disease. Your results may vary. Talk with your doctor or health care professional to see if Nexium is right for you. Most erosions heal in 4 to 8 weeks with Nexium. The most common side effects of Nexium and Prilosec are headache, diarrhea, and abdominal pain. Symptom relief does not rule out serious stomach conditions. For a FREE Trial Offer call 1-888-PURPLEPILL. purplepill.com." After seeing the ad, Anna decided to visit her physician. The Doctor Visit. "Good afternoon Anna, how are you doing today?" Dr. Joseph Capel says as he enters the examination room. Anna replies, "I'm doing just fine." "What can I do for you today?" "Well, Dr. Capel, my neighbor has heartburn like I do and she's taking this new drug, Nexium and she says it's better than Prilosec. She even showed me an advertisement that said that I should talk to you to see if Nexium is right for me. So, here I am. I would like to try it." Dr. Capel asks, "Well Anna, how are you doing with the Prilosec? Is it relieving your heartburn?" Anna replies, dismissively, "Oh, it's fine. It's taking care of my acid reflux too." "Are you experiencing any problems due to taking Prilosec?" Dr. Capel asks. "No, I'm not having any problems with Prilosec. I just want to take the best medication available so my heartburn doesn't get worse." "Anna," says Dr. Capel, "you're doing fine with Prilosec; it seems to be taking care of your heartburn. There's no need to change your medication if it's working well." "But Dr. Capel," Anna pleaded, "Nexium is working great for my neighbor; she has the exact same thing I do! I want to try it." Flustered, Dr. Capel pauses for a second and ponders. He reminds himself that business is not going as well as it should, the economy continues to get worse, and he doesn't want to risk losing any more patients. Just last week a patient who asked for an inappropriate prescription threatened to "find a better doctor." Dr. Capel says, while writing, "All right, I'll write a script for Nexium. Take one pill a day as needed." He hands the prescription to Anna as he questions whether he has done the right thing.

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An Easy Fix vs. Lifestyle Changes? Clarence Powell is a 48-year-old African American. He is 5 feet, 11 inches tall and weighs about 250 pounds. Mr. Powell is a manager of a telemarketing firm. His job entails overseeing 35 employees, reviewing telephone logs, and negotiating contracts with potential clients. Mr. Powell spends the majority of his time at work behind a desk, with very little physical activity. Background. After work, Clarence relaxes at home by sitting on his couch, eating a continuous meal, reading sports magazines (he occasionally makes friendly wagers on sports teams with people at work), and watching television. Clarence's continuous meals often begin with a snack of pretzels or potato chips while waiting for dinner. Later, Clarence enjoys a big dinner. His wife, Mary, is an excellent soul-food cook. She likes to prepare Clarence's favorite foods often, deep-fried chicken, pork chops or stewed oxtails. Clarence ends the evening with dessert, typically huge pieces of cake or pie. Recently, Mr. Powell was required to have a physical examination for his job's new insurance program. He received a written report indicating that his cholesterol levels were slightly elevated. A cautionary note on the report said that high cholesterol could lead to serious health problems and advised Clarence to consult with his personal physician about how to reduce his cholesterol levels. Clarence's first thought was, "But I feel fine!" But he decided to see his doctor anyway just to be sure, hoping to take care of this problem before it got worse. The next day, Clarence made a doctor's appointment for the following Tuesday at 3:00 p.m. The night before his doctor's appointment, Clarence engaged in his usual routine, enjoying an after-dinner snack, inattentively watching television, and skimming through the latest issue of Sports Illustrated. Clarence's attention was captured by an advertisement for Lipitor, a prescription medication that lowers cholesterol levels. Clarence noticed that the advertisement said something about talking to your doctor to get more information about Lipitor. The ad actually contained four separate references to communicating with a doctor about Lipitor, including a large heading, featured over a picture of a pair of dice that showed the numbers 290 and 220. The heading read, "If You're Trying to Lower Your Cholesterol, But Your Numbers Still Come Up High ... Ask Your Doctor for the Lowdown On Lipitor." The advertisement stated that Lipitor, "in combination with diet and exercise, was proven in clinical studies to reduce LDL 'bad' cholesterol by 39%-60%," and that "Lipitor is prescribed more than any other cholesterol medication." The advertisement also contained a graph showing that Lipitor lowers total cholesterol, LDL ("bad" cholesterol), and triglycerides. Clarence decided to talk to his physician about taking Lipitor. The Doctor Visit. Clarence arrived for his appointment at his physician's office 5 minutes early. Clarence's physician, Dr. Peter Smith, is usually prompt in seeing patients at appointed times. Clarence has been seeing Dr. Smith for about 20 years, and they have established a pleasant and open relationship. Both are big sports fans and they usually spend the first couple of minutes of each appointment talking about the latest sports news. Shortly after the nurse finished taking Clarence's vitals, Dr. Smith entered the examination room. "Clarence, how about those Buccaneers?" "They were just too strong. The Bucs' defense totally dominated the game. I knew they were good, but I didn't know they were that good." Nodding his head in agreement, Dr. Smith replied, "You said it. And it was the head coach's first year with the team; what a job he did!" After a couple of minutes of sports banter, Dr. Smith said, "Enough about football, Clarence, what brings you in today?" "Well, Doc, my job just changed insurance companies and the new insurance program required us to take a physical to get on the insurance plan. We had to go to their clinic for


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the physicals, that's why I didn't see you. I got this report in the mail that says I have high cholesterol and that I should see you to get some help to reduce my cholesterol before something bad happens." "Oh, I see." replied Dr. Smith. "Let me take some blood so I can run some tests to find out how high your cholesterol levels are, and we'll go from there." "Doc, maybe there's no need," Clarence said confidently. "I saw an ad in a magazine for a drug called Lipitor. It said that I can take my 'Bad cholesterol numbers to new lows' by using Lipitor." "Yes, Lipitor can help reduce your cholesterol levels," Dr. Smith answered in a calm tone. "However, before we start you on any medication, we need to know more about your cholesterol levels." Bewildered, Clarence asked, "What else do you need to know, Doc? The tests said that my cholesterol was slightly high, and that if I didn't take care of it, something bad might happen." "This is true. High cholesterol levels can lead to major health problems. But first, I need to see your test results. Depending on the levels, we can devise a plan to help reduce your cholesterol. You said that the tests indicated that your cholesterol levels were slightly high. If the levels aren't too high, we could probably control your cholesterol just by changing your diet and exercise. That way you could avoid using prescription medications and still reduce risks associated with high cholesterol." "Great!" Clarence said aloud. He thought to himself, "Maybe I can take care of this problem without spending money on prescription drugs; our budget has been tight enough lately." "So Clarence, if it's ok with you, I will have you come back in the morning so we can draw some blood so we can get those test results." "Sure, Doc. No problem," Clarence replied.

I Want to Crawl Again: A Question Perceived as a Demand? Ruth Fairchild is a 65-year-old Caucasian female and a retired physical education teacher. When Ruth decided to retire at age 55, she was concerned about what her life would be like without work. Ruth soon found a variety of things to keep her busy. She became active in her community, participating in programs like Habitat for Humanity and Meals on Wheels. Background. When Ruth turned 61 years old, her daughter Cathy had a beautiful baby girl named Cynthia. Ruth fell head-over-heels in love with Cynthia the moment she laid eyes on her. From that point on, Ruth decided that Cynthia would be her first concern. For the next few months, Ruth spent night and day with Cathy and the baby, sharing her experience as a mother and providing Cathy with day-to-day help taking care of the baby. When Cathy returned to work, Ruth offered to care for the baby during the day. This saved Cathy from paying for day care and gave Ruth great satisfaction. While the baby was still quite young, Ruth spent the day reading books to her and taking her on walks through the local neighborhood park, first in a stroller and later in a little red wagon. When Cynthia began to walk and, all too soon, to run, Ruth began to do more activities with Cynthia that required greater physical strength and endurance. However, at age 63, Ruth's own body had changed as well. Her knee joints began to ache, bothering her to the point of preventing her from engaging in the physical activities she had done routinely until recently. Ruth had begun experiencing stiffness in her knees after sitting with the baby for long periods of time and soon began to have trouble keeping up with the active child. Ruth discussed her condition with her neighbor, a nurse by profession. Ruth's neighbor told her that she might be experiencing the early stages of osteoarthritis and advised her to see a doctor. All of her life, Ruth hated going to the doctor, so two years have passed since Ruth began having problems with her knees, and her condition

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has deteriorated. Ruth frequently experiences swelling, pain, and loss of motion in her knees, severely limiting her ability to engage in physical activities with her granddaughter. Sometimes, Ruth feels helpless as well as depressed by her condition. Finally, she decides to seek medical attention. The Doctor Visit. Ruth arrived at the doctor's office early and sat in the waiting room. A few minutes later, a nurse informed Ruth that Dr. Joseph Callahan was backed up and would see her in about 20 minutes. Waiting anxiously, Ruth picks up an issue of Reader's Digest. Flipping through the pages, Ruth sees a picture of an older woman on her hands and knees, giving her young grandson a ride on her back. A quote in large type reads, "I can crawl again!" A statement at the top of the picture says, "The remarkable treatment for the pain of osteoarthritis of the knee." Ruth thinks, "I used to be able to do that. Maybe this is what I need." The rest of the ad reads, "Now you can get up to 12 months of pain relief with just 1 month of treatment. No pills to take—just five injections into the knee, spaced over a single month. Makes daily living easier and more comfortable—contains a natural substance that acts like an 'oil' to help cushion and lubricate your knee joint. Easy on your system—avoids the side effects of prescription-strength arthritis drugs. [In small print] Available only from your doctor. As with any injection, you may feel temporary mild pain at the injection site. You may also have swelling, heat and/or redness, rash, itching or bruising around the joint. These reactions are generally mild and usually do not last long. Duration and degree of pain relief will vary; not all patients will experience relief. HYALGAN is used to relieve pain due to osteoarthritis of the knee in patients who do not get adequate relief from simple pain killers and physical therapy, including exercise. HYALGAN should not be used in patients with known hypersensitivity to hyaluronate preparations." After reading the advertisement, Ruth decides to take the ad in with her just in case she wants to show it to Dr. Callahan. The nurse calls Ruth in and takes her vitals. A few minutes later Dr. Callahan enters the examination room. "Good to see you, Mrs. Fairchild, it's been a long time." "Yes, Dr. Callahan. You may not remember, but I don't enjoy going to see doctors, only when I really need help." "So what's going on?" "Well, about two years ago, the joints in my knees began giving me problems, and now my knees are so bad that my daily activities are extremely limited." Dr. Callahan takes a clinical history, performs a physical examination, and decides to take x-rays to do a full evaluation of the knee area. After looking at the x-ray films, he says, "It looks like you've developed osteoarthritis. That's a common type of arthritis also called degenerative joint disease. It has affected the cartilage in your knees. Cartilage is the slippery tissue that covers the ends on bones. Osteoarthritis breaks down and wears away cartilage, causing the bones to rub together. That's what is causing the pain, swelling, and loss of motion in your knee." "Well, Dr. Callahan, can you treat it?" "Yes, osteoarthritis treatment involves exercise, weight control, rest and joint care, pain relief techniques, medicines, alternative therapies, and, in the worst case scenario, surgery." "You mentioned medications. I have this advertisement here." Ruth pulls out the issue of Reader's Digest and shows Dr. Callahan the advertisement for Hyalgan. "What do you think about this drug?" Dr. Callahan reads the advertisement quickly. From previous experience with patients and DTCA, Dr. Callahan assumes that Ruth is asking for a prescription for Hyalgan. He thinks, "I'm so tired of these advertisements pushing my patients to demand drugs from me. I'm the one who has to deal with them; they are such an interference." Dr. Callahan says, "Mrs. Fairchild,


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I know that some of these ads can be very persuasive; however, not all of the drugs are right for all situations. I'm sorry, but I cannot give you a prescription for this drug. We'll start with an exercise program and some pain killers." "Dr. Callahan, I'm sorry if I offended you. I wasn't asking for a prescription for this drug. I just wanted to know what you thought. I saw this ad while waiting to see you and remembered that the drug treats osteoarthritis. I thought this might give you some ideas about what I can use to treat my knees. All I wanted was to know is if this or some other drug might help me so I can do the things I really want to do."

Researcher Meets Physician Jessica Carter, a 53-year-old Caucasian female, is a university professor in health communication. She has studied physician-patient communication and is dedicated to being in a partnership with her providers. Dr. Carter has conducted research about DTCA for several years and knows that requesting a specific drug may not be appreciated by the doctor. What she does not know is that her physician also has a professional interest in DTCA. Background. Dr. Carter has been experiencing migraine headaches, associated with her menstrual cycle, for several years. They have become increasingly severe, lasting from 3 to 5 days, and often are debilitating when they coincide with other stressors. Otherwise healthy, she has seen Dr. Katherine Wallace primarily for routine checkups. Jessica mentioned the headaches in the past, and Dr. Wallace suggested stress-management techniques and, most recently, prescribed an estrogen patch for Jessica to use during the "off week" of her oral contraceptives, when the headaches predictably occur. These efforts have gone for naught; the headaches persist. Jessica is desperate for a solution. She talks with a colleague who experiences similar headaches; they discuss things they have tried. The colleague suggests a supplement; Jessica tries that and it alleviates the headache somewhat, but only for a couple of hours; the headache returns later in the day. The colleague later tells Jessica that she might try Imitrex, a drug she has found helpful. One day at work, Jessica has a headache that is rapidly increasing in severity. The colleague offers her a sample of Imitrex. Jessica checks out Imitrex on a federal health website before taking it. She finds no contraindications that apply to her. Miraculously, the headache disappears within the hour and does not return in the remaining days when typically it would persist or recur. Jessica determines that she will ask her doctor for a prescription for Imitrex. In the intervening weeks, Jessica notices an advertisement for Imitrex in Time magazine. The large print reads, "Break through migraine pain with IMITREX. Stay alert and active. Most prescribed migraine medicine in the U.S." Further on, the text explains the benefits of the drug as "nonsedating" and says "Ask your doctor if IMITREX is right for you." The ad also explains, "You should not take IMITREX if you have certain types of heart or blood vessel disease, a history of strokes or TIAs, or uncontrolled blood pressure. Very rarely, certain people, even some without heart disease, have had serious heart-related problems." But the ad also includes a toll-free number the reader can call for a "free trial" of IMITREX. Jessica knows that the ads are required to identify risks and, because she has no history of the mentioned contraindications, remains confident that IMITREX is the solution for her migraines. Jessica also noticed the drug being advertised on television; that ad reinforced her view that Imitrex was both effective and safe. The Doctor Visit. Jessica's office visit is routine. As she typically does, following the examination, Dr. Wallace sits down for a couple of minutes of what always seems to Jessica more like a conversation with a friend than a medical consultation.

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Dr. Wallace says, "Everything seems fine. We'll run your routine blood tests and let you know the results. What else should we be talking about today?" "You know," Jessica replied, "I have been having these menstrual migraine headaches over the past few years. Last time you prescribed an estrogen patch. Unfortunately, that hasn't helped. I really am ready to try something stronger. These headaches have been debilitating several times in the past six months and I'm getting desperate." "Let me do some checking about some possible drugs for you, OK?" asked Dr. Wallace. Jessica stopped her and said, "Well, I hate to admit this because I know it's not a good idea generally, but I got a sample of Imitrex from a friend who has the same problem." "Oh, everyone does that," Dr. Wallace said reassuringly. "Did it help?" "Did it ever! Not only did my headache go away, it didn't return over the next few days. Just one dose took it out completely. I checked Imitrex out on Healthfinder before I took it; I didn't see anything that sounded problematic." "Wow! That's great!" said Dr. Wallace. "Just let me check my PDR and see if there is anything we should be concerned about." Dr. Wallace left the room for a few minutes; she returned with a slight frown on her face. She said, "You aren't going to believe this! I don't think I've ever seen this for another drug. The PDR recommends a cardiovascular evaluation before prescribing Imitrex and suggests that the first dose should be taken in the doctor's officer Jessica, crestfallen, says, "Oh, no, and I checked for problems." "Yea, this sucks, doesn't it?" said Dr. Wallace sympathetically. "But it says there have been some problems with strokes and we don't want you stroking-out over just a headache." "But these aren' I just headaches! They are debilitating for several days several times a year," explained Jessica, sounding frustrated. "Well, this is the PDR, which is going to be cautious, but I think this means we need to get you a cardiovascular checkup. You probably ought to have one about now anyway," offered Dr. Wallace. "I know," admitted Jessica. "I just hoped we had a solution." Then she chuckled and explained, "You know why I laughed? I study this stuff! Some of my research is on direct-toconsumer prescription drug advertising," "Really?" asked Dr. Wallace. Jessica continued, "This drug is advertised on television! And I know they don't say those kinds of things in the ads!" Dr. Wallace retorted, "Yep. If they can't get the docs to prescribe a drug, they go straight to the patient!" "One thing I just remembered," said Jessica. "The only other thing that ever worked for me was a sample of a drug my previous doctor gave me one day when I was going out the door. They didn't even put it in my records but I remember that it contained both caffeine and a barbiturate. I used it sparingly, a fraction of a pill at a time, because I can be pretty sensitive to drugs and I knew this was a serious drug. That worked. But I never was able to get the drug's name from that doctor," sighed Jessica. "Well, I'm pretty sure I know what drug that is; let me check, but I think it's Fiorinal; that's a common treatment for stress headaches. I'll check, but I think we could give you a small amount to get you through the next couple of cycles until we have time to get that cardiovascular evaluation." "Great, I've really been suffering," said Jessica, relieved. "How long have you been having these now, several years right? I think if I were you I'd be ready to string my doctors up by now," said Dr. Wallace. "I am comfortable giving you this drug."


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Jessica admitted she wasn't so sure she wanted Imitrex, given what the PDR said, but Dr. Wallace assured her that "Imitrex is a good drug; we just want to be careful about risk factors." "Maybe this other drug will work and I won't need Imitrex anyway, but I'll get that cardiovascular evaluation anyway," reasoned Jessica. "I really appreciate you trying less drastic treatments first; I've just gotten to the point that I can't take these headaches anymore. I'm glad you're willing to work with me on this."

THE DEBATE CONTINUES The physicians' debate and the five cases involving patients reflect the potential for DTCA to influence the physician-patient relationship and their communication. Although the ads themselves have been studied and research notes changing patterns both in communication between physicians and their patients regarding advertised drugs and in the nature of the health care relationship, future research needs to study the direct links between DTCA and those changes. Meanwhile, the debate continues.

RELEVANT CONCEPTS Consumerism: A model of the physician-patient relationship in which the patient (consumer) takes a business orientation and holds the primary decision-making authority; the doctor's role consists of an expert being consulted by the patient. Direct-to-consumer advertising: A marketing strategy by which the pharmaceutical industry promotes prescription drugs directly to consumers. Health care relationship models: Prototypes of the relationship between health care providers and their clients (often labeled doctor-patient relationships). Identity appeals/motivators: Persuasive cues that may appeal to or motivate behavior on the basis of how an individual sees himself or herself or would like to be seen by others (self-presentation; e.g., enhance perception of being friendly, likeable, attractive). Instrumental appeals/motivators: Persuasive cues that may appeal to or motivate behavior on the basis of a task orientation, that is, provide a rational task-based reason for action (e.g., improve health, reduce symptoms). Modeling: Behavior change that results from imitating others' behavior observed to result in rewards or avoidance of punishment. Participatory health care model: Also called mutual participation model. A model of the physician-patient relationship in which the provider and the patient share control of decision making. Paternalism: A model of the physician-patient relationship in which the provider holds primary control of decision making; the patient's role is to cooperate with the doctor's decisions. Relational appeals/motivators: Persuasive cues that may appeal to or motivate behavior on the basis of desired relational outcomes (e.g., trust, intimacy, connectedness). Relational control: Holding definitional authority within the relationship. Social cognitive theory: A social influence theory developed by Albert Bandura that explains behavior change in terms of rewards associated with observed behavior that, in turn, become motivators for imitating (modeling) that behavior.

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DISCUSSION QUESTIONS 1. Discuss how the cases might be understood and explained using social cognitive theory. Identify examples of motivators (identity, relational, and instrumental) and modeling cues from the specific advertisements, and consider (a) how these might have influenced the patients' behavior in the cases, and (b) how such cues might influences consumers' behavior in general. 2. Discuss ways in which the dynamics of relational control and the nature of the specific doctor-patient relationship (a) were potentially altered by the patients' exposure to DTCA in the cases, and (b) might be altered in general as consumers are exposed repeatedly over time to a large number of prescription drug advertisements. Consider differences in physicians' responses to drug requests based on the relationship model preferred by the physician (i.e., paternalism, participatory, consumerism). 3. How might differences in patients' ways of approaching physicians about advertised drugs influence both the physician's response and the physician-patient relationship? Consider how physicians might interpret (or misinterpret, for example, as "demanding" a prescription) patients' approaches resulting from DTCA and alter their responses accordingly. 4. What opinions, if any, did you have about DTCA prior to reading this chapter? Have your views changed about the value of DTCA in the larger health care system? If so, how? 5. If you saw an advertisement for a prescription drug that seemed relevant to a medical condition you experience, how do you think you would approach the physician about the drug? How might your previous relationship with that physician influence your approach? Consider how the reactions and approaches of older patients, with established relationships with their doctors, might differ from those of the often-healthy traditional college student, who often does not have an established relationship with a doctor.

REFERENCES/SUGGESTED READINGS Bandura, A. (1994). Social cognitive theory of mass communication. In J. Bryant & D. Zillman (Eds.), Media effects: Advances in theory and research (pp. 61-90). Hillsdale, NJ: Lawrence Erlbaum Associates. Bradley, L. R., & Zito, J. M. (1997). Direct-to-consumer prescription drug advertising. Medical Care, 35(\), 86-92. Cline, R. J. W., & Young, H. N. (2004). Marketing drugs, marketing health care relationships: A content analysis of visual cues in direct-to-consumer prescription drug advertising. Health Communication, 16, 131-157. Hollon, M. F. (1999). Direct-to-consumer marketing of prescription drugs: Creating consumer demand. Journal of the American Medical Association, 281, 382-384. Holmer, A. F. (1999). Direct-to-consumer prescription drug advertising builds bridges between patients and physicians. Journal of the American Medical Association, 281, 380-382.

II Issues in Decision Making


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Communication and Shared Decision Making in Context: Choosing Between Reasonable Options Carma L. Bylund Columbia Uniuersity Medical Center

Rebecca S. Imes University of Iowa People make all types of medical decisions on an individual level as a part of their health care processes—whether to go to the physician when feeling ill, whether to take medication prescribed by a physician, or whether to attend a follow-up visit. In many cases, though, medical decisions are made between a physician (or other health care provider) and a patient; this is often called shared decision making. Shared decision making in the physician-patient encounter is generally thought to happen when the physician and patient are both involved in the decision by sharing information, taking steps to build consensus about the preferred action, and finally, reaching an agreement (Charles, Gafni, & Whelan, 1997). To truly understand the shared decision-making process, it is important to look at the contexts in which these shared decisions occur. In other words, when examining shared decision making in the medical encounter, you should consider three questions about context. First, what is the medical context of the decision? The medical context strongly impacts the nature of shared decision making. For instance, shared decision making about managing diabetes will likely be quite different from shared decision making during acute care in the emergency room. Second, what is the physician-patient relational context of the decision? For example, when a patient has gone to the same physician for several years, they may develop a sense of trust and liking that would affect the shared decision-making process and would consequently make their relationship different from that of a patient and physician who have a very limited history. Additionally, that patient's and physician's beliefs about who has the power in the physician-patient relationship may also influence shared decision making. Third, what is the patient's personal context for making the decision? Each patient has a unique personal context; he or she is embedded in multiple systems, such as families, friends, cultures, organizations, and societies. Within each of these systems, health communication occurs that affects and is affected by the physician-patient talk. All of these contexts can have important implications on the shared decision-making process.

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It is especially interesting to look at shared decision making when the decision is about a controversial issue that is important to the patient and the patient's family. The following cases illustrate two sets of patients and physicians making shared decisions about these types of issues, although in very different ways.

CASE ONE Marianne Stewart sat on the cold, hard chair in the examination room next to her husband Josh, who was engrossed in a Time magazine article. Where is the doctor? she thought impatiently, looking at her watch again. She'd already been weighed, had given her urine sample, and had her physical exam. A wave of panic came over her—She never made me wait like this after an exam during my last pregnancy. I hope this doesn 't mean anything's wrong. Why else would she have asked us to stay after I got dressed? She tried to dismiss the thought. She'd made it past the crucial first 12 weeks; in fact, she was 14 weeks along now, and Dr. McKinley had found the heart beat with no problem today; everything had to be fine. So far, it had been an uneventful pregnancy. She'd had less morning sickness than she'd had with her previous pregnancy. In fact, everything seemed easier than before; perhaps this was simply because she knew what to expect this time around. Her pregnancy with now three-year-old Nicholas hadn't been bad; she'd had friends who'd had a much worse time with pregnancy than she had. Sure, she'd had some nausea, heartburn, and headaches, but it didn't seem so bad compared with what others had dealt with. Labor was the only area where Marianne felt she still didn't know what to expect. Early in her ninth month of pregnancy with Nicholas, Marianne had awoken one morning to feel something very uncomfortable under her ribs. She'd always heard that babies kick you in the ribs, so she'd figured it was his feet. A couple of weeks later, Marianne's mother had put her hand on Marianne's belly and felt the baby. "That's got to be the baby's bottom," she'd said. It did feel kind of round, Marianne remembered thinking. At her next appointment, Dr. McKinley had felt the baby's position and said that everything seemed fine. Marianne had hesitated, and then had told Dr. McKinley how she'd been feeling something uncomfortable under her ribs. Dr. McKinley had replied that she was pretty sure the baby was in the right position, but that an ultrasound scan would let them know for sure. The ultrasound technician had confirmed Marianne's suspicion—the baby was not in the right position. But that wasn't the baby's bottom she was feeling under her ribs—it was his head. Dr. McKinley had explained that if the baby didn't turn around by about a week before her due date, she could try to turn the baby. If Marianne and Josh chose not to try that, or if the baby wouldn't turn, Marianne would need to have a caesarean section (C-section). After researching their options, Marianne and Josh had decided to let the doctor try to turn the baby about five days before her due date, and when that didn't work, they agreed to the C-section. Even as she thought back on it now, Marianne didn't regret having the C-section. The recovery wasn't that bad, and she actually thought the extra recovery time in the hospital was nice. Still, sometimes when she looked at other mothers, she somehow felt left out of the club—she'd had a baby, but still had no idea what it was like to go through labor. Other women she knew would talk about their labors: when they decided to go to the hospital, how far dilated they were, how painful it was, what choices they made about pain medication, how supportive (or not) their husbands were, and on and on. What could she say? / got drugged up, they cut me open and pulled him out. Oh well, she thought. I can't expect much different this time. Her mother-in-law, who had been an obstetric nurse for 20 years, had repeatedly told her, "Once a C-section, always a C-section."

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Dr. McKinley's knock at the door jolted Marianne back into the present. "Sorry to keep you waiting," Dr. McKinley said, smiling as she entered the room and sat down at the desk. Josh put away the magazine, and Marianne took a deep breath. "Is everything okay?" "Yes, everything is fine," Dr. McKinley said reassuringly. "I asked you to stay because I wanted to take a little more time to talk to you about your options for delivery. I know it may seem like a long way down the road still, but you have a big decision ahead of you, so I wanted to make sure you had plenty of time to think about it." Marianne looked puzzled, "What do you mean? I thought I had to have another C-section." "If it were 20 years ago, that would probably be what most doctors would suggest to you. But now, we deliver babies vaginally after a previous C-section nearly every day. It's called a VBAC, which stands for vaginal birth after caesarean. You're really a good candidate for one," Dr. McKinley added. "Wait," said Josh. "Does she have to have a VBAC?" "Absolutely not. In fact, in most cases like Marianne's, it is up to the woman—and her husband—whether or not to have one. Either decision you make will be respected by me and the other doctors here in the practice," Dr. McKinley assured Josh. She looked at both of them. "You have some time to think about this, and I would be happy if we could talk about it some more during your next visits. I'm sure that as the weeks go by you will have questions." Marianne nodded. "Okay," was all she really could think of to say. This possibility had come as a shock to her. On one hand, it was welcome news— she could have the vaginal birth she'd wanted and prepared for last time. On the other hand, it also scared her. The stories she'd heard from her friends made labor sound like no picnic. Besides, what would Josh's mother say? "All right." Dr. McKinley stood up. "See you next time." 2O Weeks A few weeks later, Marianne and Josh were back in Dr. McKinley's office, this time for the ultrasound scan. When the technician told them that they were adding a daughter to their family, they were delighted and started talking about names while waiting for Dr. McKinley to come in. After the ultrasound scan, Dr. McKinley measured Marianne's growth, and they talked about how Marianne had been feeling. Then Dr. McKinley asked, "Have you thought much about the VBAC? Do you have any questions about it?" Marianne looked hesitantly at Josh. "Well, we've talked a little bit about it." She paused. "My mom was a nurse on the obstetrics floor of County Hospital for 20 years—she's retired now—and she keeps telling us that it's not a good idea," Josh added. "When did she retire?" "Well, she left the hospital, oh, in about 1990. Then she spent five years in a pediatrician's office before actually retiring," Josh said. Dr. McKinley nodded. "It makes sense that she's telling you that. The time that she left the hospital is about the time that the medical community started talking more and more about the safety of VBACs. Has she told you why she thinks you shouldn't have a VBAC?" Marianne nodded. "She mentioned something about uterine rupture. I looked it up on the Internet and found that there's about a 1-3% chance of that occurring, which doesn't seem like a lot to me." "That's about right," Dr. McKinley said, "although some evidence indicates the risk is on the higher end of that range if you are induced than if you go into labor naturally. But let me assure you, and you can assure her, that if you decide to try a VBAC, we will definitely be monitoring you for uterine rupture." "I also read something on the Internet about the VBAC being better if you want to have more children," Marianne said.

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"Yes, often the issue of wanting more children is a factor in women's decisions. In fact, I just did a repeat C-section on a woman yesterday who had decided that since this was her second and last child, she didn't want to worry about trying the VBAC." "Okay. Well, I'm sure we'll have more questions over the next few weeks," Marianne said. "That's what I'm here for," Dr. McKinley said, smiling, and prepared to leave. "Thanks," said Marianne. "See you soon." 28 Weeks Marianne was glad she was seeing Dr. McKinley this visit. Dr. McKinley had been out of town right before her last visit, so she'd seen a new doctor in the practice instead. Josh wasn't with her this time. Although he had diligently come to all of her appointments the first time she was pregnant, she'd told him she didn't think he needed to come after the heartbeat was heard and the ultrasound scan was performed this pregnancy, as the visits seemed pretty routine at this point. After the physical exam was done, Marianne raised the issue of the VBAC again. "When we first talked about VBAC, you said that you thought I was a good candidate for it. I've read some more things on the Internet and talked to a friend who had to make a similar decision about having a VBAC, and I think I know what you mean by me being a good candidate, but I want to make sure." "Sure, go ahead," Dr. McKinley nodded and sat down. "From what I found out, it sounds like I'm a good candidate because I didn't have a problem with labor or anything—my baby was just breech." "Right. If you'd gone through 36 hours of labor, and we'd found out the baby was in distress and had to do an emergency C-section, it would be a bit of a different story," Dr. McKinley replied. "I'd probably still encourage you to consider it, but there would be more risk. You're also a good candidate because you're young, and when I did the C-section last time I didn't notice anything abnormal about your uterus." "You seem to think I should try the VBAC," Marianne said. Dr. McKinley smiled. "I'm sorry if it seems like I'm trying to pressure you," she said. "You are right. I would like to see you try a VBAC. But," she paused and looked straight at Marianne, "if you aren't comfortable with it, then I will have no problem scheduling the C-section for you." "Yeah, I just think my mother-in-law will have a problem if I don't schedule the C-section!" Marianne said. Dr. McKinley laughed. "Well, grandparents can be pretty concerned about their grandchildren's births. And I know your mother-in-law means well—you just have to remember that she is operating under a different set of facts and assumptions. Have you and Josh talked to her about what we've talked about?" "Yes," Marianne sighed. "But it doesn't seem to change her mind. She's pretty stubborn." "Well, you still have a few weeks to make your decision. And remember, it is your decision, not hers. But try not to get too stressed over it. The most important thing right now is to make sure you are taking good care of yourself and this baby," Dr. McKinley stood up to go. "Don't forget—I want to start seeing you every two weeks now that you're in the third trimester." "Wow—it's that time already," Marianne said. "Okay, see you in a couple of weeks!"

34 Weeks Marianne's 30- and 32-week visits with Dr. McKinley were short. In fact, they hadn't talked at all about the VBAC decision, which was fine with Marianne because she and Josh still hadn't decided what to do. Marianne was leaning toward trying the VBAC, whereas Josh wanted her to just have the C-section. But today, Marianne had some more questions.


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After the physical exam, Marianne told Dr. McKinley, "I read something in the paper sometime last week about VBACs. Did you see it?" "Yes, you mean the article about the medical study?" "Yeah, that's right. It said that VBACs are only successful about 65% of the time. That doesn't seem like a very good success rate." "I can see why that could be a little disheartening," Dr. McKinley replied. "Let me say a couple of things about that statistic, though. First, as I think we've already talked about, you are a good candidate for VBAC. That success rate takes into account other people who aren't as good candidates—people who've had distress during labor before, who are older, and so forth. So, I'd give you a better-than-average chance of success. Second, you need to think about what the word success means in this case. Let's say that, for some reason, you aren't successful in having a VBAC. We'll do a repeat C-section delivery, and you will, in all likelihood, have a healthy baby and recover from the C-section just fine, just like you did with your first one. Now, I'd call that a successful birth." Marianne nodded. "That makes sense." She took a deep breath. "This is a really hard decision for me. I keep thinking that I've made up my mind, but it only lasts for a little while and then I change it again." "I can tell it's a tough decision for you—it is for a lot of people," Dr. McKinley said. "I'm glad that you are giving it a lot of consideration." "I suppose I need to decide soon, though." "How is Josh feeling about it?" "Well, he was pretty adamant against it—because of his mother—and then a woman he knows at work had a VBAC a few weeks ago. He talked to her a little bit when she came into the office to show off the baby yesterday, and she only had good things to say about it—how much better the recovery was, how she liked being completely aware of what was going on, rather than under anesthesia, and stuff like that," Marianne replied. "So now, he says he would be okay with the VBAC if that's what I want to do." "That's good!" Dr. McKinley said, then added, "But it sounds like you're still not sure." "No, but I've told myself I'm going to make a decision by my next visit, so I'll tell you then." "Fair enough," Dr. McKinley said. "See you then." "Bye."

36 Weeks Marianne sat waiting for Dr. McKinley in exam room, with Josh next to her. He'd come this time because she'd been having what she thought were some intermittent, light contractions since the night before. She really didn't know what a contraction felt like, though, because she'd never had one. Josh had wanted her to page the on-call doctor last night, but because she'd had an appointment scheduled already for today, she just figured she'd wait to see Dr. McKinley. Dr. McKinley came in and checked Marianne. "You aren't dilated yet," she said. "Those are probably just Braxton Hicks contractions—just think of them as 'practice' contractions. Your uterus is getting warmed up for the real thing!" Marianne smiled. "That's right. I remember hearing about those when we took the birthing class the first time I was pregnant. Good. I was starting to think that it wouldn't matter if I'd decided to try the VBAC or not if I was already in labor." Dr. McKinley laughed, "That has been known to happen. Someone is determined to have a repeat C-section and then shows up in labor and delivery pretty far along in labor and changes her mind and decides to have a VBAC!" She paused. "Speaking of which—at our last visit, you said you'd have a decision by today."

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Marianne took a deep breath. "Yes. I guess it really wouldn't have mattered if I was in labor because we've decided to try the VBAC. I know that I still might end up with a C-section, but it seems to me that the risk is pretty low, all things considered. I feel comfortable that you and the others will make sure I'm doing okay. Also, we're not sure this is the last child we want to have, so we would rather not have another C-section." Dr. McKinley looked at Josh. "You're okay with this?" "Yes," he nodded. "And your mother?" she asked. "Well, I told her that either she better start supporting us in this decision or else she wouldn't be seeing this grandchild!" He laughed. "Actually, I wasn't that harsh, but I did explain to her that this is what we wanted to do, and she agreed to keep her doubts to herself." "Great. I'm glad to hear it. Now let's talk a bit about what you should look for and what you should do when Marianne starts having real contractions."

CASE TWO Jim Cooper sat down in the living room to await the weekly call from his son, Ryan. Sure, he'd call back if Jim didn't answer the phone right away, but Jim's two granddaughters, Ryan's girls, could only be corralled for so long, and Ryan always had them ready to get on the phone first to tell Grandpa about their week. Jim and his son had always been close, but ever since Jim's wife, Irene, passed away three years ago, Ryan never missed his weekly phone call to his now 72-year-old father. The phone rang. "Hey, Dad, how are you? Hold on a sec... yes Vicki, you are first... Dad, here are the girls." Jim talked to his granddaughters, Vicki and Maya, about biology, basketball, and boys— their favorite subjects, although not in that order! They wanted to know if he would be flying down to see their spring concerts for band and ballet. Ryan's wife, Sheila, got on the phone for a few minutes to invite Jim to go on the family trip over Memorial Day. When Ryan got back on the phone, Jim was still chuckling over the southern accent he could hear in the girls' voices. After Irene died, Ryan had suggested that Jim move to Texas to live near them, but Jim said that Ohio was his home. Besides, this was where his golf buddies were from his old advertising agency, and his Kiwanis club was always busy with projects in which Jim still took an active role. Jim and Ryan chatted about developments in Ryan's job as a software engineer, and after hearing about the Kiwanis fundraiser, Ryan turned the conversation back to his father. "Dad, did you see the doctor this week like you said you would? Was it about your heart? Is that why you went?" Jim hesitated a second before answering. He had never liked discussing his medical issues with anyone but his wife—Irene had always known which questions to ask. Plus, she told him that she loved him and she felt it was important to know what was going on with his health. About six months after she died, Ryan started asking health questions of his father as well. Ryan wasn't as skilled at the questioning as Irene had been, but after a few months, Jim understood why Ryan felt he needed to ask and he tried to be truthful, even when it was embarrassing. "Yeah, I saw Doc. But it wasn't about my heart. I've been taking my medicine and golfing more just like I said I would. This was for something else. Doc says... uh, well, he says that my problem going to, going to, um, going to the bathroom probably is just because of an enlarged prostate. I'm supposed to see him again in two months or sooner if I have any more pain or serious discomfort." "Well, Dad, I'm glad you saw him. You've been seeing Dr. Willett for how long?"


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"Hmm... I don't need to see Doc very often, but I'd guess he's been my doctor for more than 30 years now." "I'm just glad you went. Well, Dad, I need to help the girls with some homework so I'll talk to you soon. I love you!" "I love you too, Ryan. Give the girls a kiss goodnight for me!" A couple of days later, Jim was working on a fundraising letter for his Kiwanis group when the phone rang. "Ryan! What a pleasure to hear from you twice in one week! Did we forget something Sunday?" "No, Dad, but something you said worried me, and I wanted to talk to you about it. Remember what you said about the enlarged prostate? Could you tell me exactly what you remember about your doctor's visit?" "Just what I said on Sunday. I saw Doc, he made me do my business in a cup and give it to the lab lady, and then later he said that I probably just have an enlarged prostate and that it wasn't anything to worry about. He said that is what happens when guys get old and it may not be very comfortable at times, but I shouldn't worry about it and come back and see him in a couple of months." "What about the results of your PSA test? Didn't he do a PSA?" "A public service announcement? Ryan, what are you talking about? I only did the pee in the cup test. Oh, and he did that, well, he did that exam on me with his finger. Is that what you mean?" "No, Dad. That was what I was worried about. This morning while I was driving to work, I saw a billboard that said older people should see their doctor regularly and do preventative checkups for cancer." "Cancer? What? Doc never said anything about cancer." "Well, Dad, the billboard got me to thinking and I looked up prostate problems on the Internet. I didn't think this was going to be a big deal but what I read really scared me. I think you need to have this PSA test—that means prostate-specific antigen test, Dad, not public service announcement. Anyway, I think you should do it right away! A PSA test is a blood test that can tell you if you have prostate cancer. What if that is the reason you are having trouble going to the bathroom? I'm really worried, Dad. If it is cancer, then I don't think you want to 'wait and see' for a few months, do you? This information on the Internet says that PSA tests can help find cancer, and I don't understand why Dr. Willett wouldn't give you the test. I want you to promise me that you will go back to see Dr. Willett this week and if he won't give you the test, then we should find you a different doctor." "But I've been with Doc for 30-" Ryan interrupted him. "Just promise me you'll go, Dad. Please? And call me right after." Two days later, Jim sat in one of Dr. Willett's exam rooms. "Jim! What a surprise. I thought I wouldn't see you for another few months. Is something else wrong? What can I do for you today?" "Doc, well, I'm a little embarrassed about this. You see, um, well, my son wanted me to come back and see you." "Ryan is worried? What? Did he think I missed something?" Dr. Willett said jokingly. "Well, he doesn't think you missed something, but that you didn't do something he thought you should have done." "Oh? And what was that?" Dr. Willett didn't appear to be joking anymore. "It is about this prostate thing. He says that I need to have a P . . . a PS ... a..." "A PSA test?" "Yeah... that's the one. Now, you know I don't like needles, but if it will make Ryan feel better, we'd just as well do it. He says I need this right away. I'm ready now, but could you

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get that nice nurse I always like? I barely feel the needle when she does it." Jim rolled up his sleeve as he spoke. Dr. Willett perched on a stool next to the exam table where Jim was seated. "Now, Jim, I didn't forget about the PSA test. I just didn't tell you about it because I didn't think there was any reason to do so. Like you said, I know how you hate needles so I thought we'd wait a few months to see if we even needed to do this test." "But Doc, how can we wait? What if it is cancer? You never said anything about cancer before, but Ryan says we need to do this now, before the cancer gets any worse. He read all about it on the Internet, and he sounds really worried. Then yesterday, I started thinking about Irene's stroke and how hard her death was on me and the kids and then I got worried. I say if there is a test that can tell us about the cancer, let's do it!" "Jim, let's take just a minute and talk about this test. I know you and Ryan are worried, and I commend you for being willing to take the blood test to help Ryan to feel better. I wonder what Ryan told you about the PSA test." "Just that there is a blood test that can tell me if I have prostate cancer." "I wish it were that simple. Why don't I tell you some more about this test and why I decided you don't need it right now? Then, after we've talked about it, you can decide whether or not you want to do this. Here, why don't you pull up a chair rather than sit up there? I need to grab a brochure for you, and I'll be right back." Dr. Willett came back with an informational brochure and a chart. "Here you go, Jim. Some information to take home with you. We'll talk about what's in there, but I want you to have them anyway. You and Ryan were right, the PSA test is a blood test that we sometimes use to help look for prostate cancer. Sometimes, if a person has this cancer, we can discover traces in the blood of what is called prostate-specific antigen. However, this test is just one tool that helps us look for cancer. Unfortunately, the PSA test isn't accurate enough to tell us, by itself, if you have cancer." Jim looked up from the brochure. "I don't understand. A blood test is a blood test, right? If the stuff you are looking for is in there, then I have cancer. Isn't that how it works?" "Like I said, Jim, this test isn't always accurate. Let's look at that chart you are holding. You see, what we look for when we do a PSA test is a level. Any level above 4 is considered elevated. But now—and this is the part about why I didn't want to give you the test yet—only 20-30% of men who have a level above 4 actually have prostate cancer. In fact, as many as half of men who do have prostate cancer have a level that is lower than 4. Do you see what I mean?" "I think so. You're telling me that this blood test might tell me if I had an elevated level, but knowing that level might not tell us if I have cancer? So why did Ryan want me to have this test?" "You are exactly right about the level, Jim. In fact, not even the experts agree about when to use this test. There just is no clear-cut answer for this one. Now, the test isn't useless, but I decide to use it on patients only if their other risk factors are high. Your risk factors are low, your digital rectal exam did not seem abnormal, and so I decided that we should wait a few months and see. You should also know that most prostate cancers are very slow growers, and for men over the age of 70, like yourself, it may not be necessary to treat an enlarged prostate at all. You are in good company, though. Like it says right here in your brochure, over half of men 50 and older have an enlarged prostate. Now, what questions do you have for me, Jim?" "So you think that we should wait on this test? I think that might be best, if you agree. If the test doesn't tell us much and my other exams look good, I think this PSA test might just worry me for no reason. If you say I'm fine to keep golfing and go down to visit the kids next month, I think that is fine with me. What do I tell Ryan? I'm not sure I'll be able to remember all this, and he is the one who does the Internet research." "Tell Ryan that his research was good, but there are some parts of it he needs to read a little more closely. Sometimes, after people read the word 'cancer,' they forget all the rest. He's just


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a good son, trying to look out for his father. Be sure to tell him that! I'll get you some extra brochures, if you want. And if you and he still have questions, be sure to call. Also, remember this doesn't mean that we'll never do the test. If things change, or if you change your mind, we can do this test at any time. How does that sound?" "I think it sounds good. I guess I'll just come back if anything changes, but no needles today! And I would like some extra brochures, if that is OK. I'm going to need to send some to Ryan so he doesn't worry too much." DISCUSSION Both of these cases illustrate how shared decision making is affected by context. Let's start with the definition of shared decision making and see if the criteria were met in the cases, and then we will examine issues of context in these cases and how context made these cases different.

Shared Decision Making Remember that we defined shared decision making as having the following elements—both the physician and patient are involved in the decision, they share information, they take steps to build consensus about the preferred action, and they reach an agreement. Marianne and Dr. McKinley were both actively involved in discussion about the VBAC decision during several of the medical visits. They also shared a great deal of information with each other. Dr. McKinley shared medical information about VBAC with Marianne, including information about the procedure, risks, benefits, and chances of success. Marianne also shared information with Dr. McKinley—medical information that she found, as well as information about the decision-making process she and Josh were going through. In addition, Marianne and Dr. McKinley used a variety of techniques during these visits to build consensus. At the beginning of the case, Dr. McKinley presented the options to Marianne and Josh, and by stating that they could talk about the decision over the course of the next few visits, she created an environment conducive to open communication. Marianne also participated in taking steps toward consensus by finding out information on her own and then discussing it with Dr. McKinley. It seems clear that both Marianne and Dr. McKinley were working in partnership with each other on this decision. Finally, when Marianne stated she wanted to try the VBAC, Dr. McKinley agreed that this was a good decision (although she had been clear with Marianne that she would have agreed with either decision). Jim Cooper and Dr. Willet also participated in a shared decision, although different in many ways from Marianne and Dr. McKinley. Actually, the first real decision was not a shared decision—Dr. Willet made his own decision to not offer the PSA blood test to Jim the first time. The PSA decision had to be made a second time after Jim brought up the issue of the PSA test with Dr. Willet, and then it became a shared decision. This time, both Jim and Dr. Willet were involved in making the decision. Jim shared information that he had received from his son about the test and why he thought he should get it, and Dr. Willet shared information with Jim about some of the problems with the test. They worked together to build consensus by each being open to the other's opinion and wishes. Finally, Jim decided that he agreed with Dr. Willet's choice to not offer Jim the PSA test in the first place.

Context The medical contexts in these two cases differed significantly and played an important role in the decision-making process. For Marianne, because the decision regarded a birthing procedure, it was necessary that one of the two choices were made. Marianne and Josh had to consider

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the consequences of both decisions—including health risks and benefits, personal preferences, and family pressures. Jim's situation was different in that his decision was not which procedure to have, but whether or not to have a procedure, in this case, a screening test. For Jim, primary outcomes to consider seemed to be balancing the unnecessary anxiety that may result in the case of a false-positive test with his son's anxiety about the possibility of cancer. As mentioned earlier, both of these decisions were about issues that had some controversy surrounding them. The issues' controversial nature played a part in the decision-making process. There were no easy answers; in fact, different doctors may have encouraged each of these patients to make different decisions, with either decision being considered reasonable in each case. In Marianne's case, it was a difficult decision, one that took a few conversations with the doctor and several months to make. Jim's decision didn't take months, but it still took some time for Dr. Willet and him to discuss. In both cases, the doctors were willing to honor the patients' preferences. The second type of context to consider is the context of the physician-patient relationship. In any interpersonal relationship, the parties operate under the norms, expectations, and beliefs they have developed in interacting with each other. Both sets of patients and doctors were operating in a context of a previous relationship that had been established over time. For Marianne and Dr. McKinley, this relationship included working together during a previous birth, whereas Jim had seen Dr. Willet for 30 years. Certainly, the histories these patients and doctors had played a role in how they interacted during the decision-making process. For example, Dr. McKinley probably remembered from Marianne's first birth that Marianne and Josh took a very active role in making the decision of whether or not to try to turn Nicholas before agreeing to a C-section. This knowledge of Marianne and Josh may have led Dr. McKinley to interact with them differently than she might have with a patient who has been unwilling to participate in decisions in the past. Because Dr. Willet had known Irene before she died, and also knew Jim's son Ryan, he was able to better understand Jim's situation for this decision, trying to make his son happy, while still doing what was best for him. In examining the physician-patient relationships present in these two cases, we can also see how shared decision making can happen in medical relationships with different power structures. Marianne and Dr. McKinley's relationship, at least in this decision, allowed Marianne to have much of the power of making the decision. This relationship was co-constructed by Marianne and Dr. McKinley. Marianne took an active role, asked questions, and sought information both from Dr. McKinley and from other sources. Dr. McKinley encouraged Marianne to make the decision and provided information and input when asked. The power structure of Jim and Dr. Willet's relationship was markedly different. Dr. Willet had made the first decision to not give Jim the PSA test—or even the option of having the PSA test. It was only because of Ryan's insistence that Jim even approached Dr. Willet about making a different decision. Even though Dr. Willet told Jim he could decide what to do, after Dr. Willet explained to Jim his reasons for not giving him the PSA test, Jim was convinced and willing to go along with what Dr. Willet believed to be best. Clearly, these power structures had been created by both participants in both cases over time. Finally, it is clear that the patients' personal contexts played a large role in the decisionmaking process. For both Marianne and Jim, being part of a larger family system was significant. Josh's mother's opposition to the VBAC affected both Marianne and Josh's feelings about trying to have a VBAC and their conversations with Dr. McKinley. In the end, when they decided to try to have the VBAC, it was necessary for Josh to explain this decision to his mother. In Jim's case, his son was the reason that the decision-making visit was initiated in the first place. In both cases, the doctors were sensitive to the patients' family contexts and discussed these contexts with their patients. They also pointed out that the family members were concerned about the patients' well-being.


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It isn't only family members, however, that can affect the decision-making process. In Marianne and Josh's case, it was clear that a friend and coworker also had influence on the decision-making process. Marianne mentions a friend that she had spoken to who also went through a VBAC, whereas Josh's talk with a coworker who had a successful VBAC seems to be the eventual turning point for him to think they should try the VBAC. The mass media's influence on Marianne's and Jim's decision-making process was also evident in these cases. Marianne searched the Internet for information about VBACs and read an article in the newspaper. In both cases, she shared the information she found with Dr. McKinley, which became part of the decision-making process. Jim's son was also influenced by the mass media—the initial billboard that he saw grabbed his attention and made him think more about his recent conversation with his father. He then used the Internet to further his search into prostate cancer testing. Although Ryan did not understand all the conditions surrounding the screening test, his information search convinced him that his father needed to return to Dr. Willet. That visit resulted in a more correct understanding of the situation. These cases illustrate how important it is to look at the various contexts of the decision making process in order to better understand why and how it happens. By considering the medical context, the physician-patient relational context, and the patient's personal context, we are able to gain a better understanding of how and why medical decisions are made in certain ways.

RELEVANT CONCEPTS Medical context: The reason for the patient seeing the physician. This could be an illness, a disease, or preventive care. Patient participation: The level to which a patient participates in the medical encounter and/or the decision-making processes. Patient's personal context: Systems in which the patient is embedded, including families, social networks, organizations, and societies. Physician-patient relational context: The relationship that the physician and patient have created; affected by length of time of relationship and each person's perceptions of power, liking, and trust in the relationship. Physician reliance: Relying on a doctor to make choices about medical options and to keep oneself healthy. Self-reliance: Relying on oneself to make choices about medical options and to keep oneself healthy. Shared decision making: When the physician and patient are both involved in the decision by sharing information, taking steps to build consensus about the preferred action, and, finally, reaching an agreement.

DISCUSSION QUESTIONS 1. In each of these cases, which elements of the physician-patient relational context seem most important to the decision that was made? Which elements of the patient's personal context seem most important? 2. As you read in these cases, power in the physician-patient relationship is not unchanging. What are some medical contexts in which the power structure might be balanced differently for Marianne and Dr. McKinley or Jim and Dr. Willet? 3. What other factors (beyond those discussed here) in a patient's personal context might influence the medical decision-making process?

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4. Do you think shared decision making is always the best model? Is it the physician's responsibility to try to engage the patient in shared decision making? What if the patient doesn't want to be involved in the decision?

REFERENCES/SUGGESTED READINGS Beisecker, A. E., & Beisecker, T. D. (1993). Using metaphors to characterize doctor-patient relationships: Paternalism versus consumerism. Health Communication, 5(1), 41-58. Charles, C., Gafni, A., & Whelan, T. (1997). Shared decision-making in the medical encounter: What does it mean? (or it takes at least two to tango). Social Science and Medicine, 44(5), 681-692. Makoul, G. (1998). Perpetuating passivity: Reliance and reciprocal determinism in physician-patient interaction. Journal of Health Communication, 3, 233-259. Street, R. L. (2003). Communication in medical encounters: An ecological perspective. In T. L. Thompson, A. M. Dorsey, K. I. Miller, & R. Parrott (Eds.), The handbook of health communication (pp. 63-93). Mahwah, NJ: Lawrence Erlbaum Associates.

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Negotiating Cancer Care Through Communication Dan O'Hair Sharlene R. Thompson Uniuersity of Oklahoma Lisa Sparks George Mason Uniuersity "I should have just bought the flowers for myself," Ann Benton said under her breath, repeating words from the movie, The Hours. While Ann was waiting for her lab results, she could hear that obnoxious show Mantel playing on a television in the dark, windowless waiting room. Montel was talking to young women about their torrid relational traumas. As Ann stared blankly at the television, she shifted her thoughts back to the meaning of her life. She had just seen the blockbuster movie, The Hours and thus, was inspired to read Virginia Woolf's Mrs. Dalloway. She began making a list of all the things she wanted to do, from reading more of the classics, to learning to speak Spanish, to spending more time with true friends, to just taking care of herself. As she looked around at the other people in the waiting room, she heard whispers of other patients talking about adjuvant therapy, Whipple procedure, and ECRP. What she heard sounded like a new language, but not a beautiful romance language that she had once studied. After waiting for nearly 2 hours, she is called to the sterile examination room. Almost 9 million people in the United States have been diagnosed with cancer, and over 1 million new cases are diagnosed each year (National Cancer Institute [NCI], 200la). After heart disease, cancer ranks as the second leading cause of death in this country. It is not surprising that cancer continues to be the greatest health concern among Americans (Carlson, 2001). Medical research has enjoyed substantial success in reducing the cancer burden, especially in areas where funding has been targeted. It is heartening to know that cancer patients are overcoming this dreaded disease in record numbers (National Cancer Institute, 2001b). Despite such encouraging trends, cancer survivorship is a difficult process. Cancer patients face a multitude of challenges as they access care for their disease. The first challenge confronting cancer patients is the sense of shock and inevitable change in self-identity. Following close behind these feelings are endless decisions that patients must make about their care. To make the situation even more complex, patients and their families face a health care delivery system that is often incompatible with the goals of patient care. To fully understand the

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FIG. 7. l. Cancer Survivorship and Agency Model. (Adapted from O'Hair et al., 2OO3) problems of how social life can be perceived as a whole on the basis of a single case, case studies must provide a holistic view of modern social life. Hence, this case study follows Le Play's method, which "... presumes that society cannot be studied as a single entity or unit. The focus must be on some key element" (Hamel, 1993, p. 7). This case study focuses on Ann Benton, who is diagnosed with pancreatic cancer. As the case unfolds, it will become clear that Ann and her family must become actively involved in information management and communication strategies with her physicians and other providers as well as the managed care system. Thus, the social unit of analysis for the following case study is the cancer patient and the navigation and adaptation to her rapidly changing social world. As in the tradition of Le Play, it is "a social unit intentionally selected to provide a better understanding of the characteristic traits of society as whole" (Hamel, 1993, p. 7).

THE CANCER SURVIVORSHIP AND AGENCY MODEL The Cancer Survivorship and Agency Model (CSAM; O'Hair et al., 2003) will serve as an explanatory mechanism for charting how and why Ann and her family made decisions about her medical care. CSAM involves four steps that occur in a rather sequential manner: (1) shock, (2) uncertainty, (3) empowerment, and (4) agency (Fig. 7.1). Shock In the first stage of this model, a patient learns of the cancer diagnosis. It is termed shock because of the bewildering and often terrifying feelings that patients experience. Patients are all at once forced to enter a new world where they must learn a new language and new norms, and navigate a new environment. Within this new environment, they must quickly make decisions that are going to affect the rest of their lives.

Uncertainty The second stage is one of uncertainty. Once patients get over the shock of the cancer diagnosis, they develop dozens of questions that need answering. Some of the answers create even more uncertainty among patients. In this stage, patients must face the reality of their diagnosis and learn the language and norms of the cancer world.

Empowerment The third stage is termed empowerment. This is a place where patients begin to understand how to assert themselves in the process of cancer care. In this stage, patients have become fluent in the language and norms of the cancer world and begin to "take the wheel" and start making strategic choices to ensure their health. Patients may begin doing their own research, calling the American Cancer Society and asking questions, and possibly joining a chat room with others who are currently suffering from cancer.

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Agency In the fourth stage, agency, patients begin making choices about their lives and exerting the type of control that helps them to find a quality of life that they desire. When patients reach the agency stage, they start asserting their right to live the rest of their lives the way that they choose. This may mean that patients decide not to do a painful and risky surgical procedure to preserve their quality of life. THE PATIENT AND FAMILY Ann Benton is a 64-year-old mother of three who continues to work in her lifelong career as an advertising executive. She is part owner of the ad agency and feels a great deal of pride in helping to build the business into one that stands as the second largest in her community. Ann is known for her strength of character and her strong will. She is active in her community and church and takes great interest in her family. Ann's first husband, and the father of her three children, died from a heart attack about 10 years ago. She married Alex 7 years ago. Alex gets along reasonably well with Ann's children, Clarise (31), Jack (28), and Erica (27), all of whom are married. Ann does not have grandchildren yet. However, she is looking forward to the day when she will have the opportunity to spoil her own grandchildren.

The Diagnosis Ann had been experiencing some pain in her midsection accompanied with a slight burning sensation when she urinated. She had also been feeling very tired lately, but chalked that up to some overtime work she was putting in on a special advertising project. She thinks she remembers this happening in the past, but this time the symptoms didn't go away. She was scheduled for her biannual appointment with her obstetrician-gynecologist in about a month, but thought that maybe she ought to have herself looked at right away. She was able to get an earlier appointment and explained to her physician, Dr. Meese, the symptoms she had been experiencing. Dr. Meese: Any other symptoms you noticed besides the burning, abdominal discomfort, and fatigue? Ann: Just nervousness. Do you think this has anything to do with my ovarian operation four years ago? Dr. Meese: I can't be certain until we run some tests. I am going to send you to the lab, and they'll take blood and urine samples. I should know something in a couple of days. After going to the lab, Ann returned home feeling anxious and tense. She wanted to know the results of the lab test immediately and hated having to wait. She decided not to tell Alex or her children anything about this until she learned of the lab results. Alex: Hi, I'm home. How was your day? I see that the neighbors finally decided to call the landscapers we suggested. (Silence) Is there something wrong, honey? You seem really tense. Why don't we go out for a nice dinner, and maybe catch a movie tonight. If you don't feel up to it we could order in, how about Chinese? Ann: I'm not hungry. Alex: Ann, what is wrong, you seem...? Ann: I'm fine. I'm just busy. I just want to finish this work.

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As promised, Dr. Meese called Ann at work two days later. She asked that Ann come in to discuss the lab results. When they met, Dr. Meese told Ann that the results were suspiciously similar to results she has seen before of patients who developed chronic pancreatitis. Dr. Meese: I want you to have a CT scan some time this week. We just need to see if there's something else. Ann: Like what? Dr. Meese: It is too early to say at this point, you have early signs of jaundice, you have an unusual enzyme count sometimes associated with diabetes, and you appear to be anemic. I just want to cover all bases. Ann went to the radiology department of a large outpatient clinic near her home and had the CT scan test performed. Dr. Meese called once again and asked Ann to come in the next day. Ann wasn't having any of it. Ann: No! I want to know now what the CT scan found. Dr. Meese: I don't like doing this on the phone, but you are a friend and I know how strong willed you can be. There is a mass or spot on the head of your pancreas 2 cm by 4 cm. We need to have another test done to determine if it's cancerous. Ann was speechless. The word cancer coming from the phone totally unnerved her. Her grandmother had died of breast cancer, her best friend from high school had died of colon cancer, and her pastor from church had died of lung cancer. Dr. Meese: Ann... Ann... I know this is rough especially coming over the phone, that is why I wanted to see you. We can't jump to conclusions, it may simply be a cyst or even a benign form of cancer. But we really need to conduct an advanced imaging procedure called endoscopic retrograde cholangiopancreatogram or ERCP. It takes pictures of the pancreas and is more detailed and accurate than a CT scan. I also need to have you see a gastroenterologist, a GI, who is a specialist for diseases of the pancreas. His name is Dr. Vendi and he will interpret the ERCP images along with the radiologist who conducts the ERCP. Ann: Pancreatic cancer? Isn't that what Michael Landon from Little House on the Prairie died from? Are you sure taking more pictures is the right thing. Don't they do a biopsy or something to make sure? Dr. Meese: Ann, we don't know that the mass is cancerous or, even if it is, that it's malignant. Biopsies are where a needle is run into your pancreas and cells are taken out for a pathologist to test. With a biopsy you run the risk of breaking the tumor capsule and spreading malignant cells throughout the abdominal area. The imaging test is just as good without the risk. I've already set up an appointment with the radiologist and the GI. Here are the details— Ann went back to the radiology department and had the ERCP imaging test conducted. The following day, she went for her appointment with the GI, Dr. Vendi. This time, she asked her husband, Alex to go with her. She decided not to tell him much except that she had some tests done and would like to have him there to help her understand what the doctors would say. Dr. Vendi: Ann, I consulted with your radiologist, Dr. Westmore, and we both agree that the mass on the head of your pancreas is adenocarcinoma of the pancreas... Ann: Cancer, right?


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Dr. Vendi: Yes, we are almost certain. Unfortunately, the tumor is larger than what the CT revealed and it may be in a stage where it is metastasizing. We hope that is not the case. Alex: What is metastasizing? Spreading? Dr. Vendi: That is often the case in advanced stages of pancreatic cancer. If it is spreading to other parts, such as the liver or lymph nodes, we wouldn't be able to do surgery. If the cancer is not stable, surgery will make it spread even more. We need to get you in to see Dr. Lewis, who is a leading oncological surgeon specializing in the pancreas. Ann: Why a surgeon? Don't most people with cancer get chemo or radiation treatments? I know that is what happened with my pastor. Dr. Vendi: Actually, surgery is the best possible treatment for adenocarcinoma of the pancreas. Chemo and radiation may be recommended after surgery, this is called adjuvant therapy, but life expectancy goes way up if you can have the tumorous tissue removed. Ann: So, what is life expectancy for pancreatic cancer? Dr. Vendi: Obviously that depends on the nature of the tumor, its size, the extent to which it has metastasized, and other factors. Some patients have lived for several years after diagnosis, but I have to be honest with you, Ann, pancreatic cancer is a very difficult disease to manage. Some patients only have 3-6 months. We hope your prognosis will be much better. Ann was indeed a strong-willed woman, but hearing all of this talk of cancerous tissue and death completely stunned her. The rest of the appointment and the ride home was just a daze for Ann. She remembers little of what else was said. After going into their bedroom, she finally said to Alex, "How am I going to tell the kids? They have always looked at me as the strong one in the family, the role model, especially after Jerry's death." "We'll do it together," Alex smiled weakly. Ann decided to call each of her children separately on the phone to break the news. After each call, Ann began to feel detached from life. She had cancer and others did not. She was now different from them and could almost hear it in their voices when they expressed their concern. She wondered if all cancer patients felt this alone. The following day, Ann arranged an appointment with the surgeon, Dr. Lewis. When she met him, he gave Ann the impression that he knew all about her disease and about her specific case. Dr. Lewis: Ann, from all of the tests, I am certain that the mass identified on the CT scan and the ERCP is a tumor and is malignant. It would not be wise to have surgery at this time. We will need to have you see a radiologist who will use radiation therapy to help contain, stabilize, and hopefully shrink the tumor. This is what we call neoadjuvant therapy, or treatments before surgery. If it shrinks, we can then do the Whipple procedure—the surgery to resect or remove the cancerous tissue. Ann: Is this Whipple procedure the only way I will be able to live longer? Dr. Lewis: It is the best treatment we know of at this time. It's a very difficult procedure, but if it's successful it can extend life for the patient. Ann: What is your best guess of my life expectancy? Dr. Lewis: That's impossible to say at this point. We will begin monitoring your blood levels and enzyme counts, and that will tell us many things such as metastatic rate and whether the tumor in your pancreas is communicating to nearby organs

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and vessels such as your liver and intestines. We hope it doesn't get into the lymph nodes because they're connected to so many other organs in the body. Once again, Ann felt completely numb. How could this happen? Why her? She ate right and she exercised regularly. There was cancer in her family but not pancreatic cancer, as far as she knew. The more she thought about her situation, the feelings of loneliness, humiliation, and fear turned to anger. This was not fair. After Ann returned home, she decided to call her regular doctor, Dr. Meese. Ann: Dr. Meese, do you think I ought to have a second opinion about this. Dr. Lewis and Dr. Vendi were fine, but this is my life we're talking about. Dr. Meese: Sure, if you want to. Do you want me to recommend other physicians? Ann: Let me get back to you.

Uncertainty Ann received a call from one of her friends, Judy, who knew someone who died from pancreatic cancer. Ann mentioned her thoughts about getting second opinions. Judy: Paul, my friend who had pancreatic cancer was impressed with the American Cancer Society's website. His wife gave me all his printouts, let's see, yes, there's a special section on "second opinions." Do you want the website address? It's www.cancer.org. Ann: Yes, I'll take a look. Ann examined the material from the American Cancer Society's website about second opinions. After thinking it over a while, she decided that she really didn't know what to do. If she waited to get second opinions, it would delay her treatment. On the other hand, it might ease her mind that she was certain that the first set of doctors was correct in their diagnosis and treatment plan. She asked Alex what to do, and he thought that it was best for her to get treatment right away. He also thought that she should consult her daughter, Clarise. Clarise agreed with Alex, and Ann decided to move forward with her treatment. Although Ann did not feel completely alone and helpless, she really wasn't sure where to turn. Alex and her children only made her feel guilty about having cancer. Her pastor was soothing in his style, but he didn't build much confidence in Ann. By her very nature, Ann felt that she ought to be doing something about the situation, but what? Her feelings of uncertainty seemed to increase as she talked to people who knew others who had died from pancreatic cancer. One suggestion from a friend was to attend support group sessions at the local American Cancer Society office. This was not particularly appealing to Ann. At the same time, Ann was beginning to feel more tired, feelings of nausea were almost constant, and the pain in her upper abdominal area was getting more intense. She wasn't sure if it was the cancer or the radiation treatments she had begun. She decided against getting a second opinion. She knew that she was supposed to maintain a healthy diet, but food was not a priority for her; she simply had no appetite. Ann received a call from Dr. Lewis and was told that the radiation treatments were working and that she was a good candidate for surgery, a Whipple procedure. Because her tumor was now localized to the head of the pancreas and the nearby cells had not been substantially affected, she should have the operation immediately. Dr. Lewis seemed reassuring that with follow-up chemotherapy, Ann would have a chance of extending her life expectancy. How much, Dr. Lewis would not commit to.


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For the first time since her diagnosis, Ann felt that she had a goal to pursue. She got on a search engine on the Internet and typed in pancreatic cancer. She was stunned by the number of hits her search returned. When she found the National Cancer Institute, she navigated the Web site, found the Whipple procedure, and read that this surgical procedure was the best way to extend life for pancreatic cancer patients. She also learned that the Whipple procedure is among the most complicated and demanding types of surgery, often taking 3 to 4 hours to perform. Most of the information she found mentioned that survival rates from the Whipple were dramatically increased if the surgeon (a) was experienced with the procedure (performing more than 40 per year) and (b) performed the surgery at a major research medical hospital that was also familiar with the procedure. She visited a number of other websites and learned many other things about the disease. She learned that few cancers are more fatal, that many people who are diagnosed are encouraged to immediately enter a hospice program for the terminally ill, and that it was a painful disease. Ann was once again taken aback. She was conflicted—on one hand, she was encouraged with the optimism she thought she heard in Dr. Lewis's voice. On the other hand, she was disillusioned with the doomsday news she was reading on the Internet. After her conversation with Clarise, Ann phoned Dr. Lewis and asked about his experience with Whipple procedures. He said that he usually does about one to two a month in the local hospital. This made Ann very nervous, and she got in touch with Dr. Meese, expressing her concern about Dr. Lewis's level of experience. Dr. Meese did some research and called Ann back. Dr. Meese: I determined that an oncological surgeon in Oklahoma City, a Dr. Postier, is a leading pancreatic surgeon. I even talked with him about your case. He performs his surgery at the University of Oklahoma Health Sciences Center hospital, where he does over 50 Whipple procedures a year. He publishes several articles a year about his work in the leading surgical journals. Ann: Let me think about it. Again, Ann was conflicted. Oklahoma City was 300 hundred miles away and that would be inconvenient for her, Alex, and everyone else. She decided to call Dr. Postier herself, and after a few minutes on the phone, she felt completely relieved with his confident and reassuring tone. He even mentioned the names of some of his patients whom she could call and ask about their experiences. He did mention that from the information he has seen about her tumor, it was important that she have the surgery within a week regardless of who did it. Dr. Postier: Ann, right now, your tumor is a stage II, which means it is only affecting your pancreas and is only 2 cm in diameter. This makes you a strong candidate for the Whipple. You may not realize it, but your situation is much better than most. Only about 15-20% of pancreatic patients are eligible for the Whipple. It's your best chance. Ann did call two of Dr. Postier's patients, and they were highly complimentary of his style and the progress they made during recovery. Ann decided to have Dr. Postier perform the surgery.

Empowerment As is typical with adenocarcinoma of the pancreas, Ann's GI recommended that she undergo a round of chemotherapy after her surgery to ensure the elimination of all cancer cells. Four weeks after having the Whipple procedure, Ann was told that she would begin chemotherapy. Before they could administer the chemo to Ann, they had to insert a port into her chest, as the

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chemicals are so toxic that giving them intravenously proves to be uncomfortable and difficult. Ann asked her oncologist what types of drugs he was planning to use. Dr. Kim: With adjuvant therapy, or post-surgical therapy, the standard treatment is a drug called 5-FU. We will use that and monitor your progress through a tumor marker blood test. It's called CA 19-9. This will tell us if the tumor cells are growing, stagnating, or declining over the period of your treatment. CA 19-9, 5-FU, adjuvant therapy? Ann began to wonder if everything associated with her now had to have a sterile sounding name. Maybe she would just call herself, Pancre-Ann, after the disease she had. After successfully making it through the surgery, Ann had a renewed sense of hope but felt reluctant and nervous about her treatment regimen. She became anxious and wondered how well she would cope with the side effects of hair loss, nausea, weight loss, and fatigue that often accompanied this treatment and felt uncertain about the process. The night before her first treatment, she decided to start a journal to reflect on her experiences dealing with her cancer. When she survived this cancer (she never thought to herself, if I survive), Ann told herself, she wanted to remember this experience and never forget how precious life really was. This experience had, in some way, given her a renewed sense of what life was really about, what was really important in life. In her diary, she wrote, "I am looking forward to a future that is cancer free, one that no longer involves the words chemotherapy, radiation, 5-FU or Whipple procedure. I dread tomorrow and remain uncertain about my future, but I am going to fight back and, despite the sadness, despair, and discomfort, I will prevail, I will survive." Ann: Alex, I feel so defeated. Having pancreatic cancer is like climbing a mountain without mountaineering equipment or even a guide. I can see the top (healing and recovery) but I often wonder how or if I will get there. I have also begun to feel like a stranger in my own body. I feel like I have become a bunch of parts and less of a whole human being. Alex: Ann, I don't know what to say. I can't imagine what you must feel like but we are beating this... things are moving forward. That morning, Ann woke before her alarm and began to get dressed in their large walkin closet. She made sure to wear the appropriate shirt so that they could easily reach her chemotherapy port. Nervously, she marched down the stairs to the kitchen and began her day as she had so many days before, reading her daily meditation and the newspaper while she drank a cup of coffee. When Ann and Alex walked into the hospital, they were immediately greeted by the head nurse. The head nurse introduced herself as Karla and began explaining the procedure to Ann. She directed her to pick a chair and have a seat. Throughout the room, there were several leather recliner chairs, and Ann proceeded toward one in the far back corner. She noticed right away that, in the middle of the room, there was a large fish tank with 50 or 60 brightly colored tropical fish. As she settled into the chair, her nerves calmed as she gazed at the fish swimming in and out of the castles and rock formations in the tank. Alex sat next to her as they both acclimated to their new surroundings. Ann noticed that this place was not as she had imagined it, that there were even patients sitting with family and friends laughing and idly chatting as they received their chemo treatments. A different nurse came to give her the first drug, an anti-nausea medication. The nurse told her to settle in, as this would take a while to drip in, and offered her a couple of magazines while she waited. As the medication began to slowly drip, she noticed that the room was cheerful and bright, with many magazines, two televisions, and a table full of puzzles. The nurse's station was


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at the front of the room behind a glass window, and she observed that the nurses were very friendly and supportive. After receiving her anti-nausea medication, she was ready to begin her first treatment, but before this happened, Karla began discussing with her the way that this drug would make her feel. She recommended that Ann begin drinking a dietary supplement, such as Ensure. Karla asked if she had felt anything different or unusual in the last few days and took her vital signs. Ann commented that she had felt really fatigued since the surgery, and Karla made a note and told her that she would discuss this with her doctor. Karla offered them both something to drink, a soda for Alex and an Ensure for Ann. The treatment itself was relatively painless, and Ann just lay back in her chair while the toxic chemicals entered her system. Ann began to realize that she wanted and needed to learn more about her cancer and this treatment procedure so that she could be more involved in her own care. After the treatment, the nurse scheduled her next appointment and told Ann to call if she had questions or needed help. As they were leaving, Ann thought to herself, it is so odd that everyone treats this as though it were a routine procedure, forgetting that, for me, this is a lifechanging experience. At the same time, it began to feel like a routine experience, and she was finding herself familiar with cancer terminology and was beginning to adapt to being a cancer patient. After this first treatment, Ann began to think differently about her experience with cancer and began to realize that she could play a powerful role in her recovery. She realized that she had a voice in her own recovery. The next morning, she began reading through the myriad of pamphlets and books she had been given about pancreatic cancer, cancer treatment, and pain management. She made a list of her questions and called the nurses at the hospital for advice on nutrition, alternative therapies, and pain management. She followed their advice and called her doctor to ask him some pertinent questions about alternative therapies she had been considering. Throughout this process, Ann's children had different reactions to their mother's cancer. Although Jack and Erica had been very supportive by emailing their mother new research they found on pancreatic cancer and by coming to visit and help take care of her, Clarise had a much harder time coping with her mother's illness and had been somewhat unsupportive. Ann began to feel like she was letting down her family, especially Clarise. Ann was afraid that she wouldn't be able to be there for her daughter when she really needed her. Clarise had just learned that she was pregnant, and she was really concerned that her mother survive so that she could be there for the birth of her grandchild. Clarise became very unemotional about the cancer and spoke with her mother in a very matter-of-fact way about the decisions she felt she should make. Ann did not understand Clarise's reaction to her illness and felt hurt when her daughter was not there to emotionally support her throughout her illness. When Ann was not feeling sick as a result of the chemo treatments and not working at her advertising agency, she did her own research on cancer to find alternative treatments. Ann joined an online support group called ACOR.org and began to regularly share her experiences with other pancreatic cancer patients. She began to realize that if she wanted to get better, she was going to have to become her own advocate so that she could do what was best for her. Ann sent the following message to her pancreatic online support group: Ann: Does anyone know anything about a new chemo drug called gemcitibine? Or cisplatin? After a day, Ann received a number of responses: Jack: Ann, gemcitibine and cisplatin aren't really new drugs; they are relatively new treatments for pancreatic cancer. Specialists at Johns Hopkins think it is best to combine the two. They have been doing clinical trials on it.

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Joyce: When my father became stage IV, they put him on gemcitibine, and his CA 19-9 levels came down for a while, but it made him more nauseous than 5-FU. Patrice: My husband was put on gemcitibine and radiotherapy, and that worked for a while, but when his CA 19-9 went up, the oncologist put him back on 5-FU. At her next visit, Ann took printouts of the comments made by her support groups and asked Dr. Kim about them. Dr. Kim assured Ann that he was very familiar with all of these drugs and a lot depends on how the patient is faring with the treatment. Then, out of the blue, Dr. Kim asked Ann if she would be interested in enrolling in a clinical trial. Ann: What is a clinical trial, exactly? Dr. Kim: Clinical trials are carefully controlled experiments in which new agents or a new combination of agents are administered to patients to see the results. Although you might think of it as being used as a guinea pig, if it works, it has a chance to prolong your life. Ann: From the little I've read, some patients get no treatment but they don't know it? Dr. Kim: A placebo? No, not these days; if you are in the control group, and you won't know which group you are in, you will get the standard treatment for pancreatic cancer. Probably 5-FU. You won't be any worse off than you are now. Ann: Let me think about it. When Ann returned home, she went to ACOR.org and asked her support group what they knew about clinical trials near her. No one had much to offer, except Jack mentioned that a website call pancreatica.org specialized in knowing where all the clinical trials were being conducted in the country. Ann visited pancratica.org and learning that a Phase II clinical trial was recruiting patients in a medical clinic in Tulsa, only 80 miles from her home. Ann forwarded the information to Dr. Kim and asked what she thought. Dr. Kim responded that this sounded like a good trial and would request that Ann be considered. In the meantime, one of Ann's support group members sent Ann an email saying that not all clinical trials are covered by insurance companies and that Ann might want to check on this. When Ann called her case worker at the insurance company, she was shocked to learn that the experimental drug being used in the clinical trial was not covered as a treatment protocol. Ann: Why not? Are you denying my right to the best care I can get? Case Worker: It's not that simple. Many of these drugs are worthless and actually do more harm than good. This one has no track record with pancreatic cancer. Ann went back to her online support group with her news and received a response from Sam, someone she had never heard from before. Sam: Ann, there is an organization that helps patients and their families stand up to insurance companies. It is called the Patient Advocate Foundation. Their Internet address is http://www.patientadvocate.org/. Ann was feeling so nauseous and tired, she called Clarise and asked her to check on it for her. Clarise acted almost privileged that her mother was entrusting her with an important detail of her life. Clarise contacted the foundation, and a case worker was assigned. As it turned out, the insurance company capitulated and allowed Ann to enroll in the clinical trial. Clarise and Alex took turns taking Ann to Tulsa for the treatments, which were five sets of four times a week for six weeks, with two weeks off to assess the CA 19-9 levels. The daily trips, the sickness from the treatments, the sterile environment, and the uncertainty of not knowing if


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she was getting the real drug were draining on Ann. Yet, she still felt that she was doing all she could to beat her disease. Both Alex and Clarise expressed a great deal of enthusiasm for the trial process. At the end of the trial, Ann's oncologist told her that she had indeed been receiving the new agent, RFS 2000. Ann didn't feel any different after the treatment than she did before it started. She was usually tired, nauseous, and had abdominal pain, although the itching she had had with 5-FU wasn't as bad. Dr. Bolder: Your CA 19-9 levels have remained constant during the trial. That is good news in the sense that no new tumor growth is indicated. It is disappointing news in that we are not seeing any drop in those levels either. In your case, we are not sure if the new agent is any better for you than what you were using before. We don't think it's worth the risk to enroll you in Phase III of this trial. In a way, Ann was relieved because she was tired of the daily 80-mile trips to get the same infusion she could get in her hometown. On the other hand, Ann began to worry that she was coming to a critical junction in the road of her life. For the first time, Ann rationally considered the possibility of dying from pancreatic cancer.

Agency Ann went back to her oncologist, Dr. Kim, and they began follow-up treatments. Ann had made a list of her concerns prior to this meeting and went in more prepared than she had ever been. Ann decided to lay it all out on the table. Ann: Dr. Kim, you've been straight with me throughout this whole ordeal and I appreciate how you put aside your own treatment to help me get enrolled in the clinical trial—even though that may not have been our best option. One of my online buddies made a comment a few days earlier that oncologists have a tendency to treat patients right up to the last minute because they don't want to give up. They do so even if the patient is dying and could live a much better life with palliative treatment (pain management) and hospice care (end of life). I have already beat the odds by living 14 months since the diagnosis. What's in store for me in the next 6 months? Three months? What are you going to recommend as a treatment regimen now that the clinical trial is over? Dr. Kim (pausing): It really is the patient who has to make these decisions. If given a choice, oncologists always want to do everything they can to prolong life. You mentioned palliative care; well, often times, chemotherapy is a form of palliative care. It can help keep cancer cells in check so that new tumors do not block the bile duct, making you feel even worse. It's impossible to say that you will have the same quality of life in 3 years or even 3 months. Pancreatic cancer is difficult to predict. I do agree that you are beyond the norm for survivorship and would hate to see you give up treatment. Ann: Well, you have given me something to think about. Dr. Kim: I think I have a pretty good idea of when you are likely to progress to stage IV of the disease. When I think you are getting close, I will let you know so that you and your family can make these decisions with me. I do agree, at any point you decide to discontinue adjuvant therapy, you should immediately get involved in a hospice program. Do you already have all of your affairs in order, just in case?

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Ann: Not everything, I've been putting off some of it because of my reluctance to give up. Dr. Kim: I hope you never give up, Ann. Being a cancer patient had changed the way that Ann looked at her life, causing her to question her past beliefs, values, and goals. Ann made the decision that she would reduce her work hours and telecommute to spend more time with her husband, her family, and by herself. She began to make lists of all of the things that she wanted to accomplish and do in her lifetime and made plans to accomplish them. She had always wanted to visit her friend in Italy and decided that if she was well enough, she would make that journey the following year. Along with a journal, Ann also began to keep a notebook full of medical articles and research on pancreatic cancer. She joined other pancreatic cancer Web sites, such as PANCAN.COM, and regularly read the sites for updates. Ann kept in contact with her providers and regularly questioned them when she found articles that conflicted with their advice. Ann sought to reduce her uncertainty and raise her self-efficacy through many means, including her local support group, her online support groups, and sharing her feelings with her family. At one point, Ann received a phone call from Dr. Bolder, the oncologist who treated her during the clinical trial in Tulsa. Dr. Bolder: Ann, I just wanted you to know that even though your trial wasn't particularly effective for you and your disease state, the results from that experiment have lead to some very exciting possibilities for combining varying doses of the new agents with some old ones. We wouldn't have been able to do that without your participation in our clinical trial. A lot of pancreatic cancer patients in the future will owe you and the others in the trial a debt of gratitude. I'm pretty certain that you would be eligible for our new trial, but whether you enroll or not, you have made a meaningful contribution for controlling pancreatic cancer. Ann: Thanks for saying so. I may be in touch. Later that night, Ann relayed the oncologist's message to her local support group. She was asked if she would try to get enrolled in the new trial that was mentioned. Ann paused—she thought of the disappointment from the last one, she thought of the hassle of traveling so often, she thought of the potential side effects of new drugs, she thought of what she might miss in life by participating. Ann smiled and said, "I'm not sure, but at least I have a choice, and that's what matters most."

EPILOGUE The CSAM (O'Hair et al., 2003) served as an explanatory mechanism for charting how Ann navigated her way through the cancer experience. Her experience of living with cancer involved the four stages of CSAM: (1) shock, (2) uncertainty, (3) empowerment, and (4) agency. In the shock stage, Ann simultaneously negotiated and renegotiated her own adaptation to the new cultural world of cancer (Sparks, 2003). At the same time, she had to negotiate and renegotiate her social identity of living with cancer with those whom she cared about (Harwood & Sparks, 2003). She had to deal with her own "shock" over the diagnosis and implications, but had to then break this news to loved ones and cope with their responses to it. In the uncertainty stage, Ann continues to deal with the information overload and conflicting information she receives from various health care providers. In addition, she continues


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to struggle with decisions about when and to whom to communicate her diagnosis, and in how much depth. For example, when conversing with Alex, Ann has learned that he is most comfortable with discussion related to the cognitive aspects of the disease. In other word Alex would rather discuss chemotherapy regimens, blood counts, and protocols than Ann's feelings about living with the disease. In the third stage (empowerment), Ann begins to think differently about her diagnosis and finds ways to integrate it more seamlessly into the various aspects of her life. Thus, Ann begins to negotiate the aspects of her treatment with health care providers, family, and friends. For example, she moves some of her appointment times around to fit her schedule rather than the schedule of the health care providers or her family members. In the agency stage, Ann actively and assertively becomes involved in her treatment. For instance, she began to keep a journal of current research articles on pancreatic cancer, frequented the National Cancer Institute website, and began to eat healthier. Ann's experiences as a pancreatic cancer patient are not atypical for most cancer patients. The grim and gruesome details of cancer and its almost equally deleterious treatment side effects were purposely muted to focus more clearly on the communication aspects of cancer care. Cancer care is a common part of everyday life, and as life expectancy continues to grow, more people will live long enough to get cancer. The National Cancer Institute has recognized the powerful effects that communication processes can bring to bear on the care of cancer. They are clear in their message that few other processes have the chance to positively influence care in such a cost-effective way. Ann's case illustrates how communication is an essential aspect in all four phases of cancer care: shock, uncertainty, empowerment, and agency. Cancer communication research carried out in the future will be instrumental in filling the gaps between what we know now and what we desperately need to understand to deliver better care for cancer patients in the future.

RELEVANT CONCEPTS Agency: Process where patients understand the choices they have and can employ competence to act on these choices. Chemotherapy: The treatment of cancer through chemicals. Clinical trial: Research study conducted with patients to evaluate a new treatment or drug. CT scan: Computed tomography. A special radiographic technique that uses a computer to display x-ray images into a two-dimensional cross-sectional image. Disease staging: Staging of cancer is based on a system that classifies the size, site, and spread of the cancer. The numbers I, II, III, and IV are used to denote stages. Empowerment: Processes of exerting control and influence in one's life. Gastroenterologist: A medical specialist in internal medicine who treats diseases of the digestive system. Hospice: A program of palliative and supportive services to dying persons and their families in the form of physical, psychological, social, and spiritual care. Metastatic: Spread of a disease from the point of origin to another part of the body. Oncologist: Medical doctor with a speciality in treating cancer. Online support groups: An interactive computer network designed for special circumstances. Palliative care: Treatment designed to reduce symptoms and pain rather than to find a cure. Radiologist: A specialist who uses imaging techniques (x-rays, ultrasound, CT, magnetic resonance imaging, fine-needle biopsy, etc.) for diagnosis (diagnostic radiologist) or treatment.

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Whipple procedure: Surgical procedure to resect (remove) the (cancerous) head of the pancreas to prevent the cancer from spreading.

DISCUSSION QUESTIONS 1. In the diagnosis stage, was Dr. Meese right in telling Ann over the phone that she might have cancer? Is it better to have made her wait with nervous expectations? Is the phone an appropriate communication channel for discussing medical issues? When would it be and when would it not be? 2. How can cancer support groups be more effective in helping its members cope with cancer care? Do you think online groups are the best place to start, as Ann did? What do you think are the communication differences between face-to-face and online support groups? 3. What would you identify as effective communication strategies that cancer patients can pursue to communicate more openly and directly with family members and significant others? What stands in the way of healthy communication? How does a family member developing cancer affect family communication, especially if communication problems existed prior to cancer entering the family? 4. For cancer patients, is more information always a good thing? When would more information actually be counterproductive for cancer patients? 5. What is the best method for evaluating health information you get from the Internet? Which sources are you more likely to trust? Why might physicians not be open to discussing information that patients bring with them from the Internet?

REFERENCES/SUGGESTED READINGS Carlson, D. K. (2001, June). AIDS ranks third among American's most urgent health problems. Gallup Poll News Service. Retrieved August 31, 2001, from http://www.gallup.com/poll/releases/pr010625b.asp. Hamel, J. (1993). Case study methods: Qualitative research methods series 32. Newbury Park, CA: Sage. Murphy, G. P., Morris, L. B., & Lange, D. (1997). Informed decisions: The complete book of cancer diagnosis, treatment, and recovery. New York: Penguin. National Cancer Institute. (2001a). Key cancer statistics. Retrieved August 31, 2001, from http://cra.nci.nih.gov /3_types_cancer/index.htm National Cancer Institute. (2001b). Cancer survivorship. Retrieved August 31, 2001, from http://cra.nci.nih.gov /3_types-cancer/cancer_survivorship.htrn O'Hair, H. D., Villagran, M. M., Wittenberg, E., Brown, K., Ferguson, M., Hall, H. T., & Doty, T. (2003). Cancer survivorship and agency model (CSAM): Implications for patient choice, decision-making, and influence. Health Communication, 15(2), 195-202. Sparks, L. (2003). An introduction to cancer communication and aging: Theoretical and research insights. Health Communication, 75(2), 123-132. Harwood, J., & Sparks, L. (2003). Social identity and health: An intergroup communication approach to cancer. Health Communication, 15(2), 145-170. O'Reilly, E., & Kelvin, J. (2003). 100 questions and answers about pancreatic cancer. Boston: Jones and Bartlett Publishers.

Additional Resource On-line Medical Dictionary: http://cancerweb.ncl.ac.uk

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Explanations of Illness: A Bridge to Understanding Timothy M. Edgar Emerson College Dawn W. Satterfield Centers for Disease Control and Prevention Bryan B. Whaley University of San Francisco As frequent and integral a communicative practice as explaining illness is in health practitionerpatient interaction, relatively little is known about the most effective method(s) for explicating illness-related information. This state of affairs is problematic in that understanding the nature of one's illness is considered to be a vital component to reducing illness-related stress, increasing adherence to the medical regimen, and self-management. However, recent research has begun to determine a few of the intricacies involved in explaining illness. For instance, the use of figurative language (i.e., analogies, metaphors, and similes) is an intuitive and frequently employed illness explanation device. However, investigations have found that children process figurative forms differently than adults and that even medical students' understanding of medical-related information can be hampered with the use of a less-than-appropriate comparison. In addition to age, effective illness explanation strategies can vary as a result of culture. Storytelling among some peoples is a powerful method of interacting about illness, but less effective among other cultures. There are many more concerns to be considered when creating and articulating illness explanation messages. The following scenarios use diabetes as the health-related topic to exemplify many of the issues and variables to be considered (e.g., audience/culture, message content, and structure) in designing messages to explain illness. As you read the cases below, pay attention to the many nuances involved in explaining illness.

PROLOGUE On a sunny Saturday morning in June in the Minneapolis-St. Paul area, a Twin Cities community group sponsored an event called "Walk for Life: A Bridge to a Healthy Tomorrow" to promote the idea that walking is an effective way to lower blood glucose levels (Fritz & Rosenquist, 2003), to reduce the risk of certain complications of diabetes (Gregg, Gerzoff, 95

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Caspersen, Williamson, & Narayan, 2003), and to help prevent diabetes (Diabetes Prevention Program Research Group, 2001). The walk organizers chose a 5-kilometer route that began in St. Paul and headed west through the smaller of the two cities toward Minneapolis. The plan called for the band of approximately 300 participants to follow a path that would lead them across the Mississippi River via the Stone Arch Bridge to Mill Ruins Park, where the walk would end. As they prepared to cross the bridge that morning, all of the hundreds of people who chose to take part in the walk carried with them personal stories and motives for being there that day. Some walked to honor the memory of a loved one who had lost the battle with diabetes, whereas others walked in support of family and friends still facing the challenges of the disease. Many in the crowd walked for themselves in an effort to manage an illness that already affected their lives or to prevent the onset of diabetes because they knew they were at greater risk. For many, type 2 diabetes was a long-time nemesis, but for others, the personal confrontation began only recently. Two people at the walk coincidentally came face-to-face with the realities of the disease on the same day in April only two months before. Prior to the early spring, type 2 diabetes had touched the lives of both Charlene Byrd and Victor Cardoso to varying degrees. Because several members of Charlene's family battled the illness, she knew how serious type 2 diabetes could be, but her knowledge of the reality of the disease was limited. Family members made reference, at times, to their "condition," and sometimes, "this diabetes"; she witnessed the physical struggles they endured when complications arose, but she realized she had much more to learn. Victor, who is a teenager, also knew that members of his family had something called "diabetes," but it always seemed to him to be a problem that only affected old people. On the afternoon of April 3, the lives of Charlene and Victor changed when their respective physicians delivered diabetes-related diagnoses to them. Charlene's doctor told her that she had pre-diabetes, whereas Victor's pediatrician explained to him and his parents that he would have to begin treatment immediately for type 2 diabetes. Shortly after their diagnoses, both Charlene and Victor learned about the June walk. As the walkers saw the finish line just over the bridge, Victor and his mother stepped onto the structure at the same moment as Charlene. Without speaking, Charlene and Victor's gaze met as they propelled themselves toward the waving banner and cheering supporters. Feeling a similar sense of accomplishment, they had no idea they shared a history of receiving news about diabetes on the same day. The two began their walk across the river armed with hope and less intense feelings of anxiety than those they experienced back in April when their doctors first revealed their test results to them. In each case, Charlene and Victor had the good fortune of having their new health conditions explained to them in understandable terms by gifted communicators who chose appropriate strategies for telling them about the most relevant aspects of diabetes for their lives. Though information was communicated to them in different ways, both gained knowledge crucial to a healthy emotional response, and the experts they encountered provided them with targeted frameworks for making sense out of their new situations.

VICTORS STORY Victor Cardoso, 15, lives in St. Paul with his family where he is completing his first year of high school. Victor, who currently stands 5 feet 7 inches and weighs 190 pounds, has struggled with his weight most of his life. He had been a large baby, and many people described him as "chubby" when he was a toddler. When friends and extended family members made comments about Victor's weight, his parents would just say that he still had "baby fat" that he needed to lose. Throughout his life, Victor has not been very physically active, but his parents, especially his father, encouraged him, in earlier years, in baseball. He liked the sport, especially to watch

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the Minnesota Twins on TV and to go to games occasionally with his dad. He played some in elementary school, but when he tried out for his middle school team in sixth grade, he found he got very tired and winded in practice, so he gave it up. In addition to getting little physical activity, Victor's weight also is the result of his high-fat diet. He loves fried foods for his main meals and often snacks with a bag of fried cheese snacks and a soda while playing video games or working on the family computer in the evening. School is a very mixed experience for Victor. He always has been a good student, excelling in most subjects but especially math. Ever since he was very young, he has been absorbed in learning and reading. In some ways, school has been an environment that has built Victor's selfesteem because of the praise he has received from teachers and his parents for his consistently high grades. At the same time, going to school often causes Victor to feel very anxious. Because of his weight, many of the kids at school, especially the other boys, tease him about his size. During his freshman year in high school, the most dreaded period of the day was gym class. Not only did he have a difficult time keeping up with the activities, but also his classmates frequently harassed him in the locker room about his weight when he had to get undressed to take a shower at the end of the period. Rico and Angela Cardoso—ages 37 and 36, respectively—are Victor's parents. They were born in the United States, the children of Mexican immigrants. Rico and Angela, who were high school sweethearts, grew up in Texas, where they got married right after their senior year. They moved to the Twin Cities a few years after getting married when a friend of Rico's helped him get a job as a construction worker. Victor was born the following year, and his sister, Helenita, was born two years later. For the last 7 years, Angela has worked as a checkout clerk at a grocery store. Despite his weight problem, Victor has been relatively healthy for most of his life. Like most kids, he had the typical childhood illnesses like, chickenpox and bouts with the flu, but he has avoided serious health problems. However, in the late winter, his mother became concerned when she noticed that Victor had an unusual darkening of the skin around his neck.1 She tried to scrub it off at one point, but soon realized that it was not dirt but some type of skin change from within the body. When his parents realized that the discoloration was not going to go away on its own, they decided that Victor should pay a visit to his pediatrician. Within a few days, Angela Cardoso was able to get an appointment to see Dr. Nancy Price, 51, who has been Victor's pediatrician for the last 3 years. Dr. Price has been practicing for over 20 years. At Victor's afternoon appointment, his mother mentioned to Dr. Price the strange dark patch on the back of Victor's neck that alerted Dr. Price to the likelihood that he had prediabetes or had progressed to type 2 diabetes. In recent years, type 2 diabetes, long considered a "middle-aged disease" (Mazur, Joe, & Young, 1998) has become increasingly common among younger populations, particularly among those already disproportionately affected by diabetes (Fagot-Campagna et ah, 2000). While gathering information for Victor's history, Dr. Price learned that one of Victor's uncles on his mother's side was diagnosed with diabetes in his 40s, and his maternal grandmother has had diabetes for many years and has taken insulin. Recently, his grandmother had to have her foot amputated. Dr. Price performed a complete physical examination and had blood work drawn to include a random blood glucose. The lab reported on the phone to Dr. Price a glucose value of 208 mg/dl, diagnostic for type 2 diabetes. The doctor asked Angela Cardoso to meet with her in her office while Victor stayed in the waiting room. When she entered the consultation room, Dr. Price said, "Mrs. Cardoso, I'm glad you brought Victor in to be checked out. The dark coloring on Victor's neck is not, in itself, harmful or infectious, but it is an outward sign that his body is not able to use insulin as it should—we call it insulin resistance. This goes along with type 2 diabetes, which is a disease we have started to see in some young people, particularly when they tend to be overweight and not very active. Diabetes occurs when someone has too much sugar in the blood, and that

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is what Victor's lab report tells us, but I would like to ask you to bring him back first thing in the morning to do another blood test, just to make sure." Angela, who was stunned to hear the news, told Dr. Price that she knew that kids can get diabetes because a child in their neighborhood developed diabetes when she was just 4 years old. Dr. Price replied, "The little girl to whom you are referring probably has what we call type 1 diabetes. People used to call it juvenile diabetes because we most often saw it in children. Those who have type 1 diabetes have to take insulin shots because their body no longer produces insulin. I believe, however, that Victor's body makes insulin but his body is not responding to it as it should." Angela exclaimed, "But that is what my mother and my oldest brother have. How could this be?" Dr. Price offered her hand to Mrs. Cardoso who clung to it for a moment, "I know this is hard to hear and believe. When I was in medical school, we called type 2 diabetes "adult-onset diabetes" because it appeared in some adults as they got older. In the last few years, though, we've started to see type 2 diabetes among younger people, including teenagers like Victor who struggle with their weight. It's also becoming more common among Hispanic kids." Dr. Price said to Angela, "I'm sure that this is a lot to take in right now. If this is diabetes, as I suspect, there is a lot Victor and your family can do to take charge of this. We'll have more time to talk about it tomorrow. Don't allow Victor to eat after midnight before coming to the office at 8 a.m. He can only drink water." Angela agreed to Dr. Price's recommendation and said that she would return the next morning. When they got to the car, Victor, of course, wanted to know what the doctor said. His mother simply told him that there were different possibilities and that he should not worry. When he got home from work that evening, Rico Cardoso questioned his wife about what had happened at the doctor's office that day. Angela recounted the conversation she had with Dr. Price and the things the doctor said about the possibility of Victor having diabetes. Rico simply said, "I'll go with you tomorrow." The next morning, Dr. Price got the results very shortly after the laboratory technician drew blood from Victor and saw that his fasting glucose was 138 mg/dl.2 The results she saw on the printout confirmed her suspicions from yesterday, and she knew she was now going to have to tell Victor and his parents the news. Although Dr. Price had been treating children of all ages for many years, talking to children and their parents about type 2 diabetes was not something with which she had extensive experience. She had diagnosed five teenagers with diabetes in the past year and one the previous year, but she was not completely happy with her communication about it to children and their parents. Looking for new ways of communicating this complex disease to children, Dr. Price engaged a pediatric diabetes educator in discussions. Together, they built a strategy for using easy-to-understand illustrations and analogies for youngsters just learning they have diabetes. Their main goals were to make things understandable, memorable, and relevant to day-to-day life. After Victor and his parents entered the consultation room, Dr. Price introduced herself to Mr. Cardoso, thanking him for coming that morning. She then began, "Victor, when you were here yesterday, the dark spot on your neck and the results of your blood test made me think that you probably have a condition called type 2 diabetes. After getting the results of the blood test we did this morning, I now know for sure that's what you have. I know this might sound a bit scary, but it doesn't have to be. It's something that I can help you with." Dr. Price knew from recent experience that it did not make sense to go directly into explanations of the difference between type 2 and type 1 diabetes or to try to explain in detail the causes of the disease. She said, "Now I would like to make sure you understand the basics about diabetes—just so the next steps we take will make sense to you. I want you to promise


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me that if I'm going too fast or you want me to explain something again, then you will stop me. Can you promise me that?" Feeling a bit shocked and not knowing what else to say, Victor looked at his mom and simply said, "OK." He knew that his grandmother who lived in Texas has diabetes, but he only saw her a few times a year and never asked that many questions about it. He assumed it was something that happened to people when they got old, like having heart trouble or difficulty remembering things. He knew that his grandmother had her foot removed and that it had something to do with diabetes, but again, he thought it happened primarily because she was elderly. When he first heard Dr. Price say that he had diabetes, he could not imagine how this was relevant to him. Dr. Price started by saying, "Victor, in science class at school, you might remember your teacher talking at some point about how every cell in our body gets energy to do its work from the food that we eat. It's kind of like fuel to run a car. That energy comes from what we call glucose or blood sugar. We all have an organ called a pancreas that is located about here." Dr. Price then gently took her hand and placed it on Victor's abdomen. As she pointed to a picture of the human anatomy on her wall, she continued, "You can see a picture of what it looks like right here. What the pancreas does is to make something called insulin, which helps sugar from food get into your body's cells. When a person has the type of diabetes that you have, your body makes insulin, but it doesn't do the job it should. So, sugar builds up in your blood and can't get into your cells the way it is supposed to. Here is another way to think of it." Dr. Price then pulled from her desk an old black-and-white photograph of logs floating down a river. She continued, "I saw this picture not too long ago in a bookstore here in the city and thought it would be a good way to talk to kids about diabetes. You might also have talked in school about how when people cut down trees in forests to make into wood to build houses, they have to have some way to get the logs from the forest to the place where they cut up the logs. So they would float them down the river to the sawmill. Workers on the shores had to grab the logs to get them in the place they needed to be. If the supply of logs floating down into the river was too great for the workers to keep up with, or if the workers are not doing their job, the river would get jammed with logs. Picture for a minute your bloodstream as a river and the sugar as logs. As the sugar, or think of the logs, floats down the river, or through your bloodstream, it has to be transported by insulin where it belongs—into the cells. If the workers aren't working efficiently, the logs remain in the river and get jammed together. That's what happens with type 2 diabetes. The insulin is there to do the job, which is to transport the sugar to the cells as needed, but it's not able to do a good enough job, so glucose builds up in the bloodstream. Just like having a logjam is not a good thing for the river, having too much sugar in your blood is not good for your body and can make you sick." Victor understood the illustration, but like other children his age who Dr. Price had diagnosed with type 2 diabetes, he had other concerns. His immediate questions were, "So, am I going to be really sick? Will I have to stay home from school?" Dr. Price answered, "If you do some very important things for yourself, then you should feel good most of the time. What I want to try at the beginning is to have you eat good foods and get more exercise. If it's hard for you to do really strenuous exercise at first, then I suggest that you begin by walking each day. Maybe your parents and your sister can take turns going for walks with you. Or maybe some of your friends can walk places with you as well. At some point, you also might have to take a pill, too, but let's try it without the pill for right now. When you talk to people about having diabetes, some people might ask if you have to take shots. Your mom told me yesterday, for instance, that your grandma takes shots for her diabetes. That probably sounds a little frightening, but I think we also can avoid shots for right now—maybe for a very long time."

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Victor then asked, "What about this dark stuff on my neck? When is this going to go away? Some kid sitting behind me in English class saw it the other day at school and then told some guys that I don't take showers." Dr. Price replied, "If you do the things we just talked about, like exercising and eating better foods, you should notice it start to disappear soon." Dr. Price continued by explaining what she wanted Victor to do next. "First," she said, "I want you and your mom to make an appointment this next week with a terrific dietitian here at the office who will talk to you about good food choices for you to eat. Our receptionist will help you make that appointment. Second, I want you to start getting more exercise." "To show you what good foods and exercise will do for you, I want to give you another mental picture." She went over to a cabinet and pulled out a brightly colored round object and handed it to Victor. She continued, "You probably have seen one of these before in a store or maybe one of your friends has one. They're actually called Hoberman spheres (Satterfield et al., in press), but," she laughed, "I like to just refer to them as 'those weird looking balls that grow.' They look strange, but I think they're great for talking about diabetes. Glucose isn't able to get into your cells because insulin isn't able to get the cells to open up like they should. Well, what happens when you choose healthy foods and start getting exercise is that your own insulin starts to do a better job. Now, pull on the ball with your fingers, and you'll see what happens." As Victor pulled, he saw the sphere expand in volume 10 times. "Now," said Dr. Price, "think of your cells allowing in the glucose to make energy." Victor contracted and expanded the globe a few more times, and then said to his dad, "We have to get one of these." Dr. Price replied, "I think it's a good idea to get one too. They're not that expensive, and it's a great reminder. After you walk, open it up and think about what your body is doing." Dr. Price then explained to Victor and his parents the importance of monitoring his blood glucose on a regular basis. The doctor showed them a meter and said that when they finished with their meeting, her nurse would demonstrate to them how to use it, how to keep track of readings, and tell them where they could buy their own. "At first," she said, "people are a little nervous about having to stick their finger to do the blood test, but they make meters these days so that you can barely feel it. When the nurse gives you instructions on the appropriate level you want to reach, you can then turn it into a game for yourself to see each day how good of a job you're doing. Think of it like keeping score for a baseball game." Before Victor and his parents left, Dr. Price discussed one more thing with them. She said, "I know that what I've told you will give you quite a bit to think about. You're probably going to have lots of questions about how diabetes will affect your life that you can't think of right how. Instead of pressuring you into coming up with all of your questions now, I want you to come back in about 10 days from now so that I can see how you're progressing. During that time, I want you to take this with you." At that point, Dr. Price reached into a drawer and pulled out a small, blank notepad. On the cover in big letters, she wrote: VICTOR'S QUESTIONS. "Before I see you again," she continued, "I want you to use this pad to write down whatever questions come to your mind. Maybe your family can help you think of things. Bring the pad and your questions with you when you come next time." After talking to the nurse about how to use the monitor and making an appointment to see the dietitian, Victor and his parents headed home. During the next 10 days, his parents worked with him to get him started on the things he would have to do to stay healthy. For instance, they began by alternating days that they would take walks with him to get him exercising. For variety, sometimes they would walk to the park, whereas other times, they would go to a local mall to walk. Angela and Rico also talked about ways they could start to change the meals they prepared so that Victor would eat more of the types of foods the dietitian recommended. Rico, who enjoyed working on computers like his son, helped Victor set up a spreadsheet so


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that Victor could record his glucose levels each day. Because he liked math so much, Victor then figured out a way to do printouts that showed his progress on charts. As Dr. Price predicted, a number of questions did come to Victor's mind during the time that he was waiting to see her again, and, as she encouraged him to do, he wrote down the major questions in the notebook she gave him. As she learned over the years in her practice, kids are more concerned with how an illness is going to affect their lifestyle than they are with the medical details of the health problem. As Victor thought about what he wanted to ask her, most of his questions focused on changes he might or might not see in his daily life. When he and his mom arrived at Dr. Price's office for the follow-up, he brought along one of his charts with his glucose readings and showed her his scores. She congratulated him for keeping such good track. The levels were not yet where she wanted them to be consistently, but she encouraged him for heading in the right direction. Dr. Price then asked Victor if he had more questions for her, at which point he tore a sheet from his notepad and handed it to her. She saw the following five questions scribbled on the paper: • • • • •

Will other kids be able to tell that I have diabetes? If I do all the right things, is there a chance that the diabetes will just go away? If I have to start taking medicine, will it give me bad breath? Will I ever have to have my foot taken off like my grandmother? Will I ever be able to be thin as long as I have diabetes?

After reading the questions, Dr. Price gave him answers to each that were honest but hopeful. The answers were not necessarily the ones he wanted to hear as, for instance, when she told him that the diabetes would not just go away, but Dr. Price was able to respond in a way that eased some of his anxieties. When she finished answering his questions, Dr. Price said, "When you were here the last time, I didn't want to overwhelm you with too much information about the future, but we need to talk about how often you should come to see me from now on. As we talked about, it is very important that you monitor your blood sugar each day, but in order for me to know for sure that your glucose is in the right range, I want you to come in every 3 months to take an important blood test. That will better help me to know what's going on with your blood sugar over a longer period of time instead of just looking at the day-to-day readings that your monitor will give you. The best way to think about the test is to compare it to figuring out how well a baseball player is doing. I remember that you told me one time when you were in here for a checkup that you're a Twins fan, and I know you're good at math. Is that right?" Victor acknowledged that he loved the Twins and that Torii Hunter was his favorite player. He also told her that he had received straight As in math all year. "Ever since I was a little girl, I've been a Twins fan too. When I was young, a player named Tony Oliva was my favorite, and he was one of the best hitters in the game. I remember, when I was about 12, my father took me to a Twins game early in the season, and Tony went O-for-5 that day. I was so upset because I thought that meant he would have a terrible average that season and wouldn't win the batting title. But my father said to me, 'You can't judge the way a player hits by what he does on one day. You have to look at the average for the whole season.' That's what this test will do. It will help to me to see not just how you're doing at that particular time on that certain day like your monitor does. What is more helpful is to have an idea of how well your glucose is being controlled over a whole season, like the summer or winter." Finally, Dr. Price looked up on her wall where the diabetes educator had posted a sign for the "Walk for Life" to be held in June. "This might be something good for you and your family to do, Victor," she said. "It would be a good way to get in some fun walking that day, and

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you might meet other kids going through the same thing. If you don't feel comfortable telling people that you're doing it for yourself, then just say that you're walking for your grandma." "That would mean a lot to her," Mrs. Cardoso added. "When I see you at your next visit," Dr. Price continued, "maybe you can tell me all about it."

CHARLENES STORY Charlene Byrd, 44, a Lakota Sioux woman who grew up on a reservation in South Dakota, moved to the Twin Cities area when she was 24 because her husband, Marlin, had gotten a job with his uncle's small independent moving company. The Byrds now have a 17-yearold daughter and a 14-year-old son. Charlene works part time as a dispatcher with the same moving company that employs Marlin and has a part-time job a few evenings a week at a large discount department store in the deli department. Charlene is 5 feet 5 inches and weighs about 180 pounds. Charlene has been reasonably healthy for most of her adult life, but this past winter has been difficult. In January, she developed a case of bronchitis that she could not completely shake. She still had bouts of coughing and fatigue, causing her to miss several days of work. Her husband finally convinced her to see a doctor, something she rarely does. Charlene has no health insurance with either one of her part-time jobs, and the insurance that Marlin has from his job provides very minimal coverage. As a result, if the Byrds need health care, they usually go to a local clinic or sometimes home to the reservation. On March 23, Charlene walked into a new clinic that had recently opened in their neighborhood and waited for 2 hours. When her turn finally came, the nurse escorted her to an examining room, where she met with Dr. James Foran, 56, a general practitioner at the clinic, who had retired to the Twin Cities area after his career as a physician in the U.S. Air Force was complete. Because it was Charlene's first visit to the clinic, Dr. Foran took a thorough medical history. After auscultating her lungs and getting a chest x-ray that ruled out serious lung problems, Dr. Foran decided to prescribe an antibiotic and a bronchodilator to resolve the bronchitis. Noting that she was also overweight, he asked Charlene if anyone had ever talked to her about diabetes. She had never discussed diabetes with a health care professional, she said, but her father had died 2 years ago from kidney failure after having been on dialysis for six years. She added that an aunt and an uncle on her father's side have diabetes, and her uncle was recovering from a heart attack, which the doctor said was related to his diabetes. Her maternal grandmother also had diabetes before she died, and Charlene remembered her discomfort as a teenager at having to watch her take insulin shots. Charlene had no symptoms of diabetes, and a fingerstick blood glucose reading at her afternoon appointment was 145 mg/dl, not particularly remarkable, but Dr. Foran felt that Charlene was at risk for diabetes. Shortly before starting at the clinic, Dr. Foran had been intrigued by a series of clinical trials that confirmed his hunch based on his observations over the years—type 2 diabetes can be prevented, or at least held at bay, for years by regular physical activity and taking and keeping off just a modest amount of weight (Diabetes Prevention Program Research Group, 2001). He had followed in the medical literature the heightened interest in lifestyle interventions for people with impaired glucose tolerance or impaired fasting glucose, now called pre-diabetes by many professionals (Benjamin, Rolka, Valdez, Narayan, & Geiss, 2003). He maintained that the glucose tolerance test, based on his experience, was the best way to figure out what was going on. Dr. Foran sensed that Charlene was concerned about her health, and he thought that she might be willing to take some preventive action against diabetes, considering her family's


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history with the disease. He asked her to come in the following week for a test in the morning after fasting the previous night. She said to the doctor, "I can't really afford to take off more time from work to come back next week. Are the other tests really necessary?" Dr. Foran replied, "I think this test might tell us important information that you can do something about. Just come one morning next week and make sure that you've had nothing to eat since midnight the night before. The lab technician will take some blood, and then you will wait 2 hours before they take blood again." Charlene had more questions, but other people were waiting at the busy clinic, and there was no more time. She reluctantly went to the laboratory on the morning of April 1 for the additional test. When she arrived, a technician drew a fasting glucose from a vein in her arm and then poured a sugary, orange beverage over ice for her to drink. Two hours later, the technician drew another sample of blood from Charlene. When Dr. Foran got the results in his office that afternoon, he saw that Charlene indeed had pre-diabetes according to the standard published in the literature. Her fasting glucose was 118 mg/dl, and her blood glucose, after a 75-gram glucose beverage, was 185 mg/dl.3 Two days later, when they sat down in his office to discuss the results, Dr. Foran began, "Mrs. Byrd, based on your family history and the fact that you are a little overweight, I ran a test to tell me whether or you not you are significantly at risk for diabetes. Although you do not have diabetes itself, the results show that you have impaired glucose tolerance. We've just started calling this pre-diabetes. Is that something you have ever heard of? Most people haven't." Struggling to grasp his meaning, Mrs. Byrd said, "You said I don't have diabetes, but I have something like it?" "Well," the doctor continued, "you don't have diabetes now, but many people who have pre-diabetes go on to develop type 2 diabetes. It means that the glucose is higher in your blood than it should be, but it has not moved to the stage we would definitely say is diabetes. What I suggest that you do is lose some weight and try to exercise more, and you might be able to do something about it. If you do these things, you should probably be OK for now. Come back in 6 months, and we can check your progress then. Any questions?" Questions were forming in Charlene's mind, but she was too stunned to articulate them, so she just replied, "Not right now." As she rose to leave, she had a sick feeling in her stomach as she saw in her mind the image of her father lying in bed as he died—a once-large man who was small and dwarfed by the dialysis and heart equipment and intravenous lines surrounding him. The doctor had said she did not actually have diabetes, but she immediately assumed that she was destined for the same fate that her father, grandmother, and so many other American Indian people faced.4 As she walked home from the clinic, the tears trickled down her cheeks, a mixture of grief for her father and fear for her own future. That evening, as she told her husband about her interaction, he asked questions she was not able to answer. She realized that she left the office without really understanding what the doctor was telling her. She was not clear on the difference between diabetes and pre-diabetes, nor did she know what kind of exercise she should do, how to lose weight, or how much weight to lose. As busy as her life was already, she felt tired, overwhelmed, and resigned to the fact that she, too, would get diabetes. It would be good to be back home the following week for a family celebration. Right now, she needed the support of people from home. When the Byrds arrived at her family's home in South Dakota on Friday evening, they stayed with Charlene's mother at the house where she grew up. The next morning, Charlene and her mother drove to visit her sister, Brenda, at her home 20 miles away. When her sister asked Charlene how things were going, Charlene choked back tears as she told her them about her visit with Dr. Foran. Like Charlene's husband, her mother and sister asked questions because

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they had not heard of pre-diabetes. Again, Charlene had few answers. Since talking with Dr. Foran, she had not really known where to turn for more information. Charlene's sister quickly said, "Let's call Mary Keeps Eagle while you're here. I saw Mary a few weeks ago at the grocery store, and she looks so good. You know she used to be big and she has lost weight, and I saw her walking on that path by the reservoir several days ago. She told me that she just took a course to be able to talk to people here in the community about diabetes. She goes to homes, and they've had a few community meetings, too." Eager to talk to someone about her diagnosis, Charlene took her sister's advice and called Mary at her home that day. Charlene explained to Mary that a doctor told her recently that she has pre-diabetes, but she does not really understand what it means or what she should do. Mary offered to meet Charlene at her mother's house on Sunday to talk to her about diabetes. On Sunday, as she drove her pick-up to the home of Charlene's mother, Mary reflected on how she first became involved in diabetes work. Mary, who is 42 and grew up on a nearby reservation, had stayed at home with her four children for most of her adult life. Over a year ago, her husband had a car accident that put him in the hospital for weeks and permanently injured his leg. His recovery has been very slow, in part, because of his diabetes. Mary needed to work to help support the family and heard about opportunities to train as a community health representative (CHR), part of a program that receives special funds for diabetes prevention and control. Friends and family members encouraged her to take this job because of her people skills and the reputation she has as an excellent storyteller. Nine months ago, she went through a 3-week training course funded through the Indian Health Service to become a CHR. In the class, she learned a great deal about health, and for the entire three weeks enjoyed the healthy choices offered in the classes, including sugar-free drinks and pudding, fruit, and an endless supply of non-fat popcorn. The class went for a walk every afternoon about two, which she had looked forward to after sitting in class, and the class members all received a blood glucose meter and learned to test their own glucose. When the class talked of ways to communicate effectively and nonjudgmentally with their clients, Mary's thoughts turned to the legacy of storytelling passed on to her from her mother and grandmother. She believed that this Indian way of teaching—so that things are remembered and are not threatening to people—can help create a new, positive vision of things that otherwise might seem hopeless, like diabetes (Carter, Perez, & Gilliland, 1999). When Mary got to the home of Charlene's mother, Charlene thanked her for coming and invited her in. After sitting at the kitchen table talking with Charlene and her mother for a while, Mary said to them, "I try to get some walking in almost every day. Would you like to come with me, Charlene?" Charlene agreed, and they walked to a nearby path together. Charlene said, "When I called you, I told you that the doctor said that I have a condition—a long name I can't remember, but it's like having 'pre-diabetes.' He said that I may not go on to develop diabetes, but I'm very afraid that I will. You know what diabetes has done to my family. He also said I needed to exercise and lose some weight, but I don't know if that will do any good." From her training and her several months of experience, Mary knew that diabetes can be frightening for people who had witnessed the devastation it can cause among people they love. She had learned many facts in the course, but did not want to overwhelm Charlene with these. Small steps are the key. She talked about how, just by the walking they were doing then, their bodies were enjoying the benefits. Mary explained, "When we eat, the insulin in our bodies needs to do its work to take blood sugar to our cells for energy. Just by moving our muscles, like we are doing now, allows the insulin to open up the cells and allow glucose or blood sugar to get in rather than stay in the bloodstream. We don't want that to happen." Mary then opened her hands as she said this to illustrate symbolically for Charlene the effect walking could have for her, especially if it became a routine. She added that dropping


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some weight can complement the effect. Mary said, "Taking off just 10 pounds can be a big help."5 Charlene was encouraged because these steps seemed like simple ones she could take. As they walked further, Mary said to Charlene, "I have a story I'd like to try out on you, if you don't mind. I think stories might help people—different stories for different people." Mary began, "You might already know this story. A young Indian man was on a quest for vision and preparation for adulthood when he set off to climb a mountain peak. When he reached the top, his heart swelled with joy at the beauty of all that lay before him. Then he saw a snake who spoke to him that said, 'I am about to die. It is too cold for me up here, and I am freezing. There is no food, and I am starving. I beg you to put me under your shirt and take me down to the valley.' 'No,' said the young man. 'I know your kind. You are a snake. If I pick you up, you will bite and kill me.' 'Not so,' said the snake, 'I will treat you differently. If you do this for me, I will not harm you.' The young man resisted, but finally, he tucked the snake under his shirt and carried it down to the valley. There, as the young man lay gently on the grass, the snake suddenly coiled and leapt, biting him on the leg. 'But you promised,' cried the young man as he lay dying. And the snake said, 'You knew what I was when you picked me up. I am what I am.'" Mary then added, "Charlene, that snake is like diabetes. We know what it is, and it can't be trusted. Just like with the young man, it strikes at Indian people without mercy." Mary continued, "But we can't give up hope. I don't like ending the story with the snake winning. So, I want to tell you another story about the same snake. The snake, basking in the sun at the foot of the mountain, suddenly got trapped by a rock that fell on him. A kind-hearted rabbit that heard his cries responded and rolled the rock off of him. However, the snake surprised him by saying that he wanted to 'reward' the rabbit by eating him for dinner. A wise coyote, which knew the character of both the snake and the rabbit, came along just in time and said she would be the judge. The coyote listened to both their stories, and then tricked the snake by telling him that he could best judge the truth if she could see the snake's exact, former position under the rock. Once the snake was trapped back under the rock, the coyote announced that the snake's reward for trying to eat the kind rabbit was to stay under the rock." Mary laughed, "That snake is our enemy. It's diabetes, after all, and we know what it does, but I think we can put it under a rock. We should not ignore it, like it's not there, but we should be clever enough to outsmart it. And maybe we can learn something from diabetes, too. It's an enemy, but it's also a teacher" (Creeden, 1994; Satterfield, 2001). "I like the stories," Charlene said. "Do you mean that maybe there are some things we need to learn from diabetes? Like about why so many people are getting it?" Charlene asked. "Yes," Mary replied, "that's what I've been thinking. That we can learn something from it—like remembering the good ways of our people and trying to keep them in the picture, even now. We can eat good foods and stay active so we can avoid diabetes." "Can you explain, Mary, what exactly the doctor meant when he said that I have prediabetes?" Charlene asked. "That means you're at a stage where you could go on to get diabetes, but it doesn't always have to happen." Mary replied. "A little can be a lot. Like what we're doing now—walking. She added, "We can keep the snake under the rock by taking small steps. Do you have a place to walk where you live in Minneapolis?" "Well," said Charlene, "I don't like to go out alone, but as long as one of my kids will go with me, we can walk around the neighborhood. I think they both would help me, but it's not going to be easy. I'm just not sure that I can find the time. It could become a burden." Mary responded, "I know that it's not easy, but try not to think of it as a burden. Instead, I want you to think of it as a gift. It is a gift you can give to yourself. It is a gift you can give to your husband, your two children, and the grandchildren that your children will give you someday. Your husband needs his wife, your children need their mother, and your grandchildren someday

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will need you for your wisdom. By taking care of your health, you will give them a great gift. You might have to be clever to find ways to fit walking into to your life, but it'll be worth it. When you get back to Minnesota and go for your first walk, you should say to yourself, Today I'm walking for the future. Today I'm walking for my grandchildren who are not yet born so that they will have a healthy grandmother who will love them and teach them about our ways the same way that my grandmother taught me.'" "The food part won't be easy either," Charlene continued. "I'm working two part-time jobs and I have about 20 minutes to get home and change clothes before going to my second job. I pick up food at the deli where I work. Who has time to cook? You also know what it's like when you visit people—you eat." "Yes," Mary nodded. "But I think that's where we can sort of let diabetes teach us. Our people didn't get this disease before our grandparents' time. What did they do that kept them from getting diabetes? It had to be partly the foods they ate, and they worked so hard. I've been making soups like my grandmother still keeps on the stove, and I take that and a pot of Indian beans to feasts. People always say those bring back good memories." "That's a good thought," Charlene responded. "I want my kids to have those 'memory foods,' too. I think I'll talk to my mother about cooking up some beans and things and maybe take back a little of her soup." As they headed back to the home of Charlene's mother, Charlene felt less anxious than she had before. She took comfort in Mary's words and the walk felt good. As they parted ways, Charlene thanked Mary, and Charlene asked Mary if she could call her the next week if she had more questions. Mary encouraged her to do so. The following week, after arriving back in the Twin Cities, Charlene called Mary to proudly tell her that she and her kids were walking almost every day, and they were trying to eat good foods, like the ones she remembered from her childhood. Charlene's mother had even packed up some frozen soup and beans they were using. Mary was thrilled and said they should celebrate soon. She added she had seen a poster on a walk for health in the Twin Cities called "Walk for Life: A Bridge to a Healthy Tomorrow" on June 3. "Why don't you go?" she said. "We're going to have one here on the same day, so I'll be thinking of you. I'll be walking at the same time."

EPILOGUE When Victor and Charlene crossed the bridge at the end of the walk, they were greeted with shouts of encouragement, handshakes, and cold water to drink. Feeling a sense of accomplishment, their private thoughts turned to the resistance each was putting up against diabetes. Victor still felt somewhat angry about his diagnosis. "Why should a kid like me have to deal with an old person's disease?" he thought at times since Dr. Price first told him he had diabetes. But as he walked and saw other kids at the event, he started picturing that weird-looking ball opening to let the glucose in, and he already seemed to have energy. His body was not resisting the insulin as it had. His muscles were moving, and that made it possible for glucose to get in its place in his cells to give him energy, not sitting around in his bloodstream like a logjam in a river. Maybe he and his dad could hit some balls later that day. As Victor downed his water, he saw Charlene getting a refill herself. She smiled at him and his mother. "What brought you here today?" she asked. "We're here because of my son's diabetes. He just found out he has it," his mother said. "That's too bad," Charlene said. "I just found out I have pre-diabetes. I'm trying to outsmart it." She smiled to herself as she thought of the coyote and the snake. "Me, too" said Victor. "Do you want to hear a story a friend told me?" Charlene asked.


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RELEVANT CONCEPTS

Age of interactant: Number of years lived of persons involved in the discussion of illness. Comparisons: Illustrating a point through a form of similitude (e.g., analogy, metaphor). Content of illness explanation: The "what" of a message designed to explicate illness. Culture: A body of meanings, beliefs, norms, values, and practices that are learned, transmitted, and shared through a communication. Illness explanation strategies: Communicative methods or tactics to make the nature of illness and its implications understood. Storytelling: The practice of using the narrative form for communicative purposes.

DISCUSSION QUESTIONS 1. Think back to a time when you had an experience with a health care provider who did an excellent job of explaining a medical condition or health threat to either you or to a member of your family. Describe that health care provider's approach to sharing illnessrelated information. What did he or she do or say that made you feel that you received a satisfactory explanation? 2. Discuss the appropriateness of Dr. Price taking two sessions to convey needed information to Victor and his parents. Should she have tried to tell them everything when she first diagnosed him with type 2 diabetes? 3. How might Dr. Price alter her explanatory strategy if she had to talk about a serious health condition with a child 3-5 years younger than Victor? 4. How could Dr. Foran have been more effective in the way that he explained Charlene's medical condition to her? 5. When Mary talked to Charlene about diabetes, she relied heavily on her culture's oral tradition in her use of the snake story. How effective would storytelling be in explaining illness to an individual who comes from your own culture or ethnic heritage? 6. Discuss the role visual presentations of illness (e.g., drawings, videos) might play in enhancing an illness explanation expressed orally.

ACKNOWLEDGMENTS The authors wish to thank Gwen Hosey and Kris Ernst of the Centers for Disease Control and Prevention for reviewing an earlier draft of this case study. Partial funding for the preparation of this chapter came from the Office of the Dean, Emerson College, School of Communication, Health Communication Research Fund, established by Dr. and Mrs. Donald B. Giddon.

ENDNOTES 1

This is a condition known as acanthosis nigricans, which is a symptom of type 2 diabetes for about 90% of children who develop the illness. In addition to the appearance of dark, shiny patches on the back of the neck, many children with type 2 diabetes have similar patterns of discoloration between the fingers and toes and axillary creases (Children with Diabetes, n.d.). For more information on how to diagnose children with type 2 diabetes, see American Diabetes Association (2000). 2 The criteria for the diagnosis of type 2 diabetes are: symptoms of diabetes plus casual plasma glucose concentration >200 mg/dl (11.1 mmol/1). Casual is defined as any time of day without regard to time since last meal. The classic symptoms of diabetes include polyuria, polydipsia, and unexplained weight loss, or fasting plasma glucose

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>126 mg/dl (7.0 mmol/1). Fasting is defined as no caloric intake for at least 8 hours. Or two-hour plasma glucose >=200 mg/dl (11.1 mmol/1) during an oral glucose tolerance test. The test should be performed using a glucose load (75 g). 3 Nondiabetic individuals with a fasting plasma glucose (FPG) >110 mg/dl (6.1 mmol/1) but 140 mg/dl (7.8 mmol/1) but

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